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Sickle cell disease (SCD) is a perfect candidate for gene editing. It is perhaps the best understood single-gene condition, due to a substitution of a single DNA base in the gene that encodes the beta subunit of hemoglobin, the protein that carries oxygen in the blood. Red blood cells, which bend into the sickle shape in the disease, obstructing circulation and causing excruciating pain, descend from hematopoietic (“blood-forming”) stem cells (HSCs) in the bone marrow. So theoretically, a patient’s stem cells can be removed, the mutation replaced in them, and then the fixed cells infused back into the patient, circumventing an immune response.

For the ones going to college for the first time or just returning, here are 5 tips on how to have a successful school year.1. Are you registered with your school’s disability office for the 504 plan? If not get on that now! For first time freshmen you’ll need to get paperwork from your doctor in order to register. If you’re returning all you should have to do is email or call the disability office. 2. Do your assignments way in advance if possible. If you get sick around time a big assignment is due, it’ll help take the stress away about trying to complete it while ill or having to make it up later. 3. Communicate with your professors! Whenever you’re going to miss class because of health related things, email them. 4. Tell your dorm director and roommate as soon as you move in that you have sickle cell. If you aren’t allowed to have mini refrigerators in your room, a doctor’s note to your director will allow you to do so. If you have certain protocol you like to follow whenever you have a crisis, inform your roommate so they can help if willing to. 5. Have fun! Don’t be afraid to be a college student! Study hard and party if you like to. Don’t be afraid to live your life because of sickle cell. Just be smart when you do go out. If you do plan to drink (for my 21+ warriors) hydrate all day and don’t go over your limit.

Approximately 17% of patients with sickle cell disease have cerebrovascular symptoms; 75% of those patients have cerebral infarction, 20% have either cerebral or subarachnoid hemorrhage, and a small percentage have cerebral sinovenous thrombosis. A 22-year-old man with sickle cell disease presented with headache and difficulty speaking after smoking marijuana. He had anomia, apraxia, and alexia and was unable to perform arithmetic. Diagnostic tests were performed, and management decisions were made.

September is National Sickle Cell Awareness Month. First officially recognized by the federal government in 1983, National Sickle Cell Awareness Month calls attention to sickle cell disease (SCD), a genetic disease that researchers estimate affects between 90,000 and 100,000 Americans. CIRM is funding a clinical trial focused on curing the disease with a stem cell-based gene therapy.People with this debilitating condition face a number of barriers in getting the help they need to keep their pain under control. In addition to the difficulty of accessing medication, they often have to overcome suspicion and discrimination. Patient Advocate Nancy Rene, of Axis Advocacy wrote the following blog about the problems families with SCD face.

Some first-hand advice and information for fellow patients living under COVID-19 Living during a global pandemic is one interesting movie-like experience. However, living with a chronic condition during a pandemic really magnifies health challenges that you have been somewhat quietly dealing with. It puts you under a microscope of careful, worrisome thoughts and concerns. This new challenge has come with certain lifestyle changes for not only the general population but more so for patients suffering chronic illnesses. It is yet another battle we are fighting. So how are patients living with sickle cell disease impacted by the COVID-19 crisis?

I will never forget the first time I cared for a patient with sickle cell. In morning report, I was told by the night nurse that my patient had slept well and her mom just left for work. A few minutes later, when I rounded on her, I found a tiny little soul writhing in pain, alone, crying for help with tears streaming down her cheeks. For a moment, I thought I had walked into the wrong room, but I quickly realized it was up to me to help this child. That day was a crash course in learning how to manage sickle cell pain. It also taught me that as a nurse, I have real power to make a difference.

Chronically Fearless blog welcomes all women who choose fearlessness in the face of chronic illness and/or adversity. Chronically Fearless aims to create a sisterhood of fearless women who share resources and experiences and offer support for one another. We hope to inspire everyone that joins the Chronically Fearless community to be STRONG, BEAUTIFUL and most of all, FEARLESS.

Crisis Over is a sickle cell disease blog managed by Aaron Lloyd, a freelance writer, photographer and filmmaker, with an intention to serve the sickle community by creating awareness about the disease. Lloyd is living with sickle cell. He lives in Freeport, NY with his wife, Michelle an educator of almost twenty years. Aaron Lloyd has written about music for over 20 years, ranging from the seminal R&B group TLC to hip hop icons A Tribe Called Quest. His work has appeared in Rap Pages, Vibe.com, and many other media outlets. He is a contributing author to the compilation book, Be A Father to Your Child – Real Talk From Black Men On Family, Love, and Fatherhood. Lloyd is currently producing, directing and writing his debut film Crisis Over, a sixty-minute documentary exploring the complexities of life with sickle cell disease.

As I sit waiting for my sister in the surgical waiting room at the Wilmer Eye Institute at John Hopkins medical center in Baltimore, Maryland, I am reminded of the importance of eye care. This is especially important for individuals with sickle cell disease (SCD) because of the potentially serious eye conditions that can occur. If you have SCD you should be seen annually by an ophthalmologist. Be sure that you aren’t only seen by an optician. You must be examined by an ophthalmologist who is skilled to test for and detect serious eye conditions. This is why it’s important to know the differences between ophthalmologists, optometrists and opticians.

We know there are several different gene variants that indicate Sickle Cell Disease, (SCD) which is characterized by the abnormal hemoglobin (the protein of the Red Blood Cell); HbSS, HbSC, HbS beta thalassemia, HbSD, HbSE, HbSO, and of course you have the Sickle Cell Trait (SCT) or HbAS. What we don't know is; why is there so much variation in the experiences of SCD related symptoms at the individual level of SCD patients? Why are some individuals constantly in pain while others rarely experience it? Why do some people die while others live? Why do we hear so many stories, from people who have SCT, who have experienced symptoms similar to that of a person who lives with SCD? Especially those horror stories of folks who pass from sudden death related to overexertion. Could these incidents have been prevented? Does everyone with SCT need to be cautious with intense physical activity? What's the probability that this could occur to them? All questions that I have yet to see a science-based documented answer. I feel like theirs so much unknown about these many different hemoglobin gene variants.

Sickle cell disease affects about 100,000 people in the United States, most of them African Americans. Over the last four decades, the average life expectancy for patients has jumped from age 14 to the 50s and higher, thanks mainly to newborn screening programs, preventive care, and antibiotic treatments to prevent associated infections, along with assistance from hydroxyurea, a drug approved in 1998.Now, promising new treatments are on the horizon for this chronic disease, which, though not immediately fatal, can cause complications that dramatically affect patients’ day-to-day lives.Hydroxyurea, the only drug approved by the Food and Drug Administration for sickle cell disease, makes blood cells function more normally, reducing pain and helping organs work better. Unfortunately, for various reasons like fertility concerns and patients’ fears about potential side effects, less than half of the people with sickle cell disease are taking it.

Hi guys I'm Tito, I’m a 23 year old London based Tenancy Manager and lover of life. For as long as I can remember I've had a passion for helping others and I guess that's why the idea of writing this blog about my health was weighing so heavily on my mind, so I can help and educate people through sharing my experiences. For the majority of my life I viewed my diagnosis as something that has weighted me down but I am recently realising that I can use it to do the opposite, and I understand that although sickle cell is a part of me, it does not define me. Through this blog I want to change the typical perceptions people have about living life with this disability, encourage more people to talk about sickle cell and ultimately raise awareness.

Living with Sickle Cell disease requires a lot of medication. For instance I normally take Pen V for infection, Folic Acid to build my blood, Palwudrine for malaria and Brufen for the pain. Sometimes when the pain is too much and I can't handle it, I am taken to hospital for more medication. In this case, I am used to the blood transfusions and the drips and most importantly and hard to get used to, the very many injections. What has motivated me to keep going strong during pain is my parents who are always there and understanding that it will always go away.

The medical definition of sickle cell disease – a group of inherited red blood cell disorders caused by abnormal hemoglobin, called hemoglobin S or sickle hemoglobin, in red blood cells – does not come close to describing the condition from the patient’s perspective. Sickle cell disorders have devastating effects on patients and their families. Patients often experience recurrent episodes of excruciating pain, or sickle cell crisis, debilitating fatigue, infections, cognitive disorders, strokes, a life-threatening condition called acute chest syndrome, and damage to their vital organs, tissues, and bones. In some patients, the disease may trigger frequent and very painful sickle cell crises that require hospitalization. In others, it may cause less frequent and milder attacks. Although mortality during childhood has improved progressively, the life expectancy among individuals with sickle cell disease in the United States is on average 30 years less than the general population.

Sickle cell disease poses a serious health threat in tropical Africa and has been declared a public health priority by the World Health Organisation. However, as the English idiom goes: 'every cloud has a silver lining' and carriers of the mutation that causes the disease are provided with resistance to malaria. Eric Elguero and colleagues present evidence of a strong association between malaria prevalence and sickle cell trait in Central Africa. Furthermore, could this selection be evidence of modern-day human evolution?

During these uncertain times, MTS Sickle Cell Foundation is here for you. We recognize the unique concerns of sickle cell families during the COVID-19 pandemic, and are amplifying our efforts to provide you with information and support. Our second COVID-19 support efforts will help families navigate life during these trying time. We have partnered with individuals and businesses to help us provide up to 2 cloth masks per household to help meet the needs of Sickle Cell families across the United States. See below for eligibility requirements and instructions on how to apply.

There was a time in my life when I used to hate the fact that I had Sickle Cell. I saw it as a burden, an inconvenience and an embarrassment… But now I own it, and I am in control!WHAT I HAVE BEEN THROUGH IS ONE THING. HOW I GOT THROUGH IT IS ANOTHER.I THINK IT’S ABOUT TIME I SHARE MY JOURNEY…

I was working on Gilberto’s narrative last night. I’m profiling his story in my 3rd chapter with 5 others to help explain how skin color across the Brazilian phenotypic continuum influences one’s relationship with their sickle cell disease and the policy around it. I wanted to make sure I was spelling his last name right and my surveys were elsewhere and I didn’t feel like listening to the audio so I went to Facebook. I typed in his name and confirmed what I thought it was and began to scroll down his page. “Why were people referring to him in past tense?” I thought. I kept scrolling when it hit me. “Wait. Did Gilberto die?!?” I knew the answer. Gilberto died March 21, 2015. So long ago.

The deepening of voice in most male with sickle cell delay. Most male with sickle cell disease have delayed growth which affects their self-esteem."YOU CANNOT SIT ON THE TABLE OF MEN WHEN YOU ARE STILL A CHILD" that's the statement they always hear from their peers. At this time age does not matter it’s the characteristics you have that matter. Delay affects every aspect that concerns the sexual development including: enlargement of the scrotum, and testes, lengthening of the penis, enlargement of seminal vesicles and prostate gland, growth of pubic hair, growth of hair on face and in the underarms.

A 24-year-old woman undergoes routine evaluation. She is pregnant at 12 weeks’ gestation. Medical history is notable for homozygous sickle cell anemia (Hb SS). She has had multiple uncomplicated painful crises treated at home with hydration, nonopioid analgesia, and incentive spirometry. She requires hospital management for these episodes approximately twice per year. She has declined the use of hydroxyurea. Her only other medication is folic acid.

The voice of people living with Sickle Cell Disease. Information, education and communication, finally, with our voice.

Hematologists, sickle cell patients, and families with loved ones living with sickle cell disorders are hoping for a universal cure for sickle cell patients. In 1982, doctors at St Jude Children’s Research Hospital were the first to cure the genetic blood disorder using a bone marrow transplant. In fact, in 2014, I had the privilege of meeting Kimberlin, the first person cured of sickle cell. The experience made me hopeful that one day I’ll also see my daughter receive a cure as well.

I’ve lived with sickle cell disease for 34 years now. Never have I imagined that a cure would be imminent, at least not within my lifetime. In fact, I remember days as an adolescent when my pediatric hematologist would tell me I’d be lucky to live long enough to experience college. It’s an everyday struggle living with an illness that penetrates all areas of my body where blood flows. Unlike most children who live with sickle cell disease (SCD), my daily struggle didn’t include constant visits to the emergency room plagued by excruciating pain (although I’d experience a great deal of pain in adulthood). Instead, the pain came from my monthly blood transfusions, which became a routine therapy after a stroke, that ultimately devastated my veins.Not long after came the nightly subcutaneously-administered iron chelation therapy overnight infusions. This nightly treatment led my teachers to question whether I was being abused at home (which by the way wasn’t the case at all- I come from a loving household, thank you) due to the common occurrence of bruising and occasional swelling on my arms & legs.

Sickle cell disease affects ~70,000 to 100,000 people in the United States, and ~10 million worldwide. The disease was first described by James B. Herrick [Herrick 1910]. The molecular basis was partly elucidated by Linus Pauling and Ibert C. Wells [Pauling 1949], and the exact causal amino acid substitution (E6V) was later identified by V.M. Ingram [Ingram 1956]. This missense variant causes hemoglobin to form long polymers which deform red blood cells into a “sickle” shape.

Next-generation gene editing is already transforming the way scientists do research, but it also holds a great deal of promise for the cure of genetic diseases. One of the most tractable genetic diseases for gene editing is sickle cell disease (SCD). The molecular basis has been known since 1949, so it’s relatively well understood. Its root cause is in bone marrow stem cells (aka hematopoietic stem cells, or “HSCs”), which are easy to get to with editing reagents. It’s monogenic and recessive, so you only need to reverse one disease allele for a cure.

I am very interested in the eye as the organ of vision, and equally keen on preserving mine. Almost three years ago, my haematologist sent me off to see an ophthalmologist because of frequent ‘eye complaints’ and thus the journey begun. Turns out, just by having sickle cell disease I could lose my vision. I know, it’s absurd! This sickle cell thing keeps cropping up in the weirdest of places. Even worse, being that my genotype is SC, I am at an increased risk of developing sickle cell retinopathy.

 Sickle cell disease often becomes more severe – and pain episodes more frequent – during pregnancy, particularly in the third trimester. A pregnant woman with sickle cell disease is more likely to have a miscarriage, still birth, preterm labor, or a low-birth-weight baby and sickle cell pregnancies are almost always considered high risk.Ideally, women with sickle cell disease should receive preconception counseling. This is because with early prenatal care and careful monitoring, women with sickle cell disease can have a healthy pregnancy and successful delivery. Women with sickle cell are more prone to pain episodes during pregnancy, especially during the third trimester.Pregnancy creates intense demands on a woman’s body, and the normal physiologic changes of pregnancy – and common complications like anemia – can easily make the sickling of red blood cells worse. If blood vessels become blocked by sickled cells, body tissues may be deprived of oxygen and die. 

Since moving to Baltimore, a city with a large African-American population, earlier this year, I have had the opportunity to see several interesting patients with sickle cell SS disease and renal complications. Here is a mention of some of the kidney abnormalities that occur with SS disease, as well as some of the clinical manifestations.The underlying pathology of renal sickle cell disease seems to be from microvascular hypoxemia: when red blood cells acquire a sickle shape and obstruct capillary flow, microinfarcts, chronic ischemic injury and medullary hypoxia can occur. Hemosiderin deposits can also be seen on biopsy.

 “You’re too pretty to have a disease,” declared the nurse in the emergency department (ED) dismissing Constance Benson’s reports of unbearable pain, a byproduct of her sickle cell disease (SCD). Constance, who is in her late twenties, is a professional actress and model living in Kennesaw, GA.It wasn’t until Constance’s blood tests came back with information about her blood count that she was treated with the care and attention she deserved. “If I had a broken leg, it would be different. If I was having a heart attack, it would be different. But because I had sickle cell disease and I look like a normal person, my pain was dismissed.”Constance’s experience in the ED is not uncommon among people with SCD, a condition that causes abnormal, sickle-shaped red blood cells that can block blood flow and limit the amount of oxygen getting to the body’s tissues and organs. 

“One minute I’d be fine, the next minute I’d be in pain. It would just come out of nowhere,” says Tywan Willis. “I would have pain in my lower back, my shoulders, and sometimes in my legs. I can’t describe it. I just know it’s a really bad pain that I get.”Tywan has sickle cell disease (SCD), an inherited blood disease that can run in families and causes abnormal, sickle-shaped red blood cells. Pain is the most common complication of SCD, and the top reason people with SCD go to the emergency room or hospital. Tywan is a regular patient at a new sickle cell clinic within the Martin Luther King, Jr. (MLK) Outpatient Center in Los Angeles (LA).The Sickle Cell Data Collection (SCDC) program in California, which is funded through the CDC Foundation, and has been collecting information to monitor the long-term trends in diagnosis, treatment, and access to health care for people with SCD since 2010, provided data that highlighted the strong need for comprehensive care for adults with SCD in LA County.

Recent advances in CRISPR/Cas9 gene-editing tools, which the blog has highlighted in the past, have renewed hope that it might be possible to cure sickle cell disease by correcting DNA typos in just the right set of cells. Now, in a study published in Science Translational Medicine, an NIH-funded research team has taken an encouraging step toward this goal. For the first time, the scientists showed that it’s possible to correct the hemoglobin mutation in blood-forming human stem cells, taken directly from donors, at a frequency that might be sufficient to help patients.

Prior to this report, the only curative therapy for sickle-cell disease was allogeneic bone marrow transplant. But few patients have matching donors, and even if a match is found, lifelong immunosuppression is necessary to prevent rejection. Gene therapy is the future. Here’s how it was done.First, the researchers harvested stem cells from the child’s bone marrow. These stem cells were exposed to a lentivirus vector containing an alternate hemoglobin gene. Now, here is where it gets really clever. You’d expect that they just put the normal hemoglobin A gene in there, but they didn’t. Instead, they inserted a variant of hemoglobin A with a glutamine-threonine amino acid substitution. This variant has anti-sickling properties. In fact, the variant was discovered in some kids who were expected to have sickle-cell disease but never manifested symptoms. This is fighting fire with fire. Use a mutated hemoglobin A gene to combat a mutated hemoglobin A gene.

Sleep is a complex process and impairments can occur at different stages of the process. Sleep impairments may include decreased total sleep time (sleep duration), an increase in the amount of time it takes to fall asleep (sleep onset latency), or an increase in the amount of wakefulness after sleep onset (sleep fragmentation) experienced by an individual (Mezick, 2013). Studies broadly suggest that sleep impairments can be directly linked to increased pain (Finan, 2013) and it is this relationship that our group chose to explore further in adults with sickle cell disease (SCD) (Moscou-Jackson, 2015).

To learn more about SCD in Grenada, I met with the Sickle Cell Association of Grenada. Their mission is to raise awareness of SCD and improve the lives of individuals and their families affected by the disorder. The Sickle Cell Association of Grenada is a voluntary organization, which was formed in September 2006 by a group of health-care personnel and concerned individuatials. I sat down with one of the volunteers to learn about the structure of the organization and some of the challenges they face. The Association is dedicated to providing education, support and counseling to affected individuals, their caregivers and families. They are specifically focused on testing for Sickle Cell Trait. If more people know that they have the trait, they can understand the complications and learn of the possibility of having a child with SCD.

As I write this post I am sitting in my bed with a heating pad on my back and a brace on my left wrist, having recently turned down going out dancing with some friends due to being too worn down from a day of sitting in an office and going out for dinner. I will wake up tomorrow morning and feel exhausted, despite having gotten around 9 hours of sleep. I will eat a full breakfast to help maintain my blood sugar and then I will go to one meeting, three classes, and usually one or two more meetings after my classes. Then I will get home, take a nap, take some Advil, do some homework, edit a blog post, and do it all again. That’s a good day. Other days aren’t nearly as productive and leave me in bed due to pain or fatigue the entire day.

The doctors and nurses that I trusted so much and that I felt were like a family, apparently did not feel the same way about me as I thought. Their frustrations with their inability to understand and address the reasons why my disease is so progressed led them to begin to question me! For some reasons as many of you know, my hospitalizations last for months on time but they began to push for my discharge days into my admittance into the hospital. Why? Because they wanted to get rid of me as soon as they could regardless of whether I was still in pain.

Let’s not just campaign for Sickle cell prevention; let’s be equally forceful in embracing the kids who are already here! Some call it a disease; some compare it to Aids and cancer. In that, we are constantly telling sickle cell carriers that they’re dying or going to die soon, but they are not. Stop the culture of death around sickle cell! We raise them in guilt and fear. We make their condition a secret. We don’t want anyone knowing about it, except for a very small circle of people that we “trust”, because we feel guilty, ashamed, or scared. We teach them to fear death for the wrong reason. How about we go back to basics? How about we remind these kids that they too are made in the image of God? How about we teach them to love themselves just the way they are? How about we encourage them to live fully? How about we just love them?

In 2008, we set up this website to provide free information to young people in a fun, fast and illustrative way. The website has grown steadily and has become a very useful place for young people to visit and learn. Our users come from all over the world. Over the years, our headline sponsor, BusinessGhana Interenet Services (www.businessghana.com) has supported us with hosting and other technical needs. What is Sickle-cell?Sickle cell disease is a disease of the blood. It is inherited. It results (or can result) in serious infections, chronic anaemia and damage to body organs. Sometimes the pains from sickle-cell can last a few days, whiles others are hospitalized for weeks and months.

A Sick Life chronicles Tionne's journey from a sickly young girl from Des Moines who was told she wouldn't live to see 30 through her teen years in Atlanta, how she broke into the music scene, and became the superstar musician and sickle-cell disease advocate she is today. Through Tionne's tough, funny, tell-it-like-it-is voice, she shares how she found the inner strength, grit, and determination to live her dream, despite her often unpredictable and debilitating health issues. She dives deep into never-before-told TLC stories, including accounts of her friendship with Lisa "Left-Eye" Lopes and her tragic death. Tionne's unvarnished discussion of her remarkable life, disease, unending strength, and ability to power through the odds offers a story like no other.

This powerful book gives you a behind the scenes look at what it's like to live with the chronic illness, Sickle Cell Anemia. Diagnosed at the tender age of two James faced many daily obstacles and challenges because of his condition but stayed determined not to let it define him. Out of the fear of being judged and looked upon negatively by others, James worked diligently to keep his health a secret and chose never to discuss it openly with anyone. Now with his first published book Breaking Silence: Living With Sickle Cell Anemia, he's done the unthinkable by opening up and revealing all about his illness.

 The most common complication of sickle cell disease (SCD) is a vaso-occlusive crisis. The sudden nature of these crises, marked by intermittent, unexpected episodes of severe pain, leads most SCD patients to turn to the emergency department (ED) for care. In a 1997 study, for example, researchers found that 85.7% of hospital admissions for SCD came through the ED. And not much has changed since then.A more recent study out of California found that out of a cohort of 4,636 patients with SCD, 88% had one or more treat-and-release visits to an ED during 2005 and 2014. And in 2005 alone, 35% of those patients had one to three treat-and-release visits, 9% had four to 10 visits, and 3% had >11 visits.

 Over my years as an adult, I’ve often faced difficulties dating with Sickle Cell. Many of these complications come into play on a psychological level, but there have also been occasions where I take sick after sharing intimacy with a partner. In this diary, I will explain my experiences in hopes that readers and sufferers will understand.When it comes to intimacy I lost my virginity later than most. This is mainly because sex wasn’t something of high importance throughout my teens. Being in and out of hospital affected my early academic career; and it meant that I wasn’t in good standing with my peers on a social level. Looking back, I’m sure it was difficult for many people of my age to relate to me. I was likely seen as an outsider and unattractive to the opposite sex as a result.

Dazzling Mirage is the story of Funmiwo, the adoptive daughter of the Adebayos, the story of her travails and triumphs against the odds of physical pains and psychological traumas which she experienced in the journey towards self-fulfillment. Frail in body but full of spirit and talent, Funmiwo represents the several thousands of sickle cell patients who live in hope; the parallel reference to the life of another anemic character.

This groundbreaking book chronicles the history of sickle cell anemia in the United States, tracing its transformation from an "invisible" malady to a powerful, yet contested, cultural symbol of African American pain and suffering.Set in Memphis, home of one of the nation's first sickle cell clinics, Dying in the City of the Blues reveals how the recognition, treatment, social understanding, and symbolism of the disease evolved in the twentieth century, shaped by the politics of race, region, health care, and biomedicine. Using medical journals, patients' accounts, black newspapers, blues lyrics, and many other sources, Keith Wailoo follows the disease and its sufferers from the early days of obscurity before sickle cell's "discovery" by Western medicine; through its rise to clinical, scientific, and social prominence in the 1950s; to its politicization in the 1970s and 1980s. Looking forward, he considers the consequences of managed care on the politics of disease in the twenty-first century.

Hope & Destiny -- Hilton Publishing's bestselling book series to the healthcare market -- remains the only comprehensive and culturally sensitive book series about sickle cell disease available today. Used by patients, parents, caregivers, children’s hospitals and sickle cell patient organizations throughout the United States, the series includes a book written just for adolescents with pictures and games to help them learn about their special disease.

Sickle Cell Disease is the most common blood disorder in the U.S. Hope & Destiny provides clear-cut and in-depth information for the more than 80,000 Americans living with sickle cell disease. Written especially for parents and caregivers, it offers the latest information on preventing complications, research, and treatment. The knowledge patients and family members need is organized in an easy-to-read format that promotes overall healthy living.

Sickle cell disease (SCD) is a group of blood disorders that affect hemoglobin, the molecule in red blood cells that carries oxygen to cells throughout the body. The CDC estimates that 90,000 to 100,000 Americans have SCD, making it a major public health concern that brings with it considerable financial consequences due to the higher number of hospitalizations and increased medical expenditures that sickle cell patients experience over a lifetime compared to the general public.Our best-selling book series today is the Hope & Destiny series, which includes a book written just for adolescents and families impacted by sickle cell disease.Hope and Destiny Jr. is now available in this new 48-page abridged workbook edition for young SCD patients to learn more about their disease, identify their pain, track symptoms and side-effects of treatments and medications, and write about the unique challenges and changes they may be experiencing so they can discuss with their doctor.

This book is a great read! It takes you on a journey through the life of a strong willed, ambitious, and humble woman who fought many battles in life ON TOP of dealing with Sickle Cell disease. Throughout this heartfelt story, Jones draws you in with her humanistic writing style, giving readers an opportunity to step inside the shoes of a sickle cell patient and see what life is like while living with this rare disease. This book is an inspiring read and will motivate anyone who has ever had to overcome a struggle of any kind, and felt alone while doing so. It's also very informative for anyone who has sickle cell disease or knows someone who does.

Linus Pauling began his professional life studying atoms, and ended it best known for his thoughts on medicine. Linking these two fields was a central body of work on the nature of human blood. During the most productive thirty years of his life, between the mid-1930s and mid-1960s, Pauling's research in this area not only advanced our understanding of how blood works at the molecular level, but branched and blossomed into vital discoveries about immunology, sickle-cell anemia, genetics, evolution, and human health. This website is designed to serve as both an introduction to an important body of work as well as a reference tool for students, teachers, physicians, scientists, and members of the general public interested in the history of modern medicine

Just Like Me!!! is a picture book designed for young children with sickle cell disease. Filled with colorful pictures and simple concepts, this resource is an easy reference for children to use when they have questions about their disease. Parents, use this story to help your children understand the sickle cell disease process. This book can also be used by sickle cell providers and staff members as a resource for young sickle cell disease patients. Review the glossary of terms often used in the care of children with sickle cell disease.This book does not replace the expertise of the healthcare provider who specialize in sickle cell disease. if you have specific questions, please consult your healthcare provider.

 For most of us, the summer represents fun: playing outdoors, cooling off in a pool and enjoying a family vacation.But for many children, teens and adults living with sickle cell disease, these activities can trigger an extremely painful “crisis” episode – the most common manifestation of this genetic, chronic, and deadly disease.Crisis has been described as a severely debilitating pain: sharp, intense, stabbing, throbbing, and more uncomfortable than post-surgical pain or even childbirth. Worse, crisis can occur at any moment without warning.Enjoying a summer day at the pool can end up in the hospital if you’re not aware of the crisis triggers. Crisis is the leading cause of hospital admissions among people with sickle cell disease. And, this recurring condition hospitalizes sufferers for 4-5 days on average, but may last a week or longer. Each year, there are about 100,000 crisis hospitalizations. 

After raising my son who has sickle cell disease SS I was sure I was prepared for all of his challenges until at 18 he had a stroke. It forced me to be as strong as I can for him and my other family members. One thing that comforted me was awareness and knowledge and having the tools to stand up and fight. Lee is a boy who has sickle cell and is going to school and he is faced with adversity so he decides to open the eyes of those who want to see the world he lives in by having sickle cell. Lee gives his voice to those who are silenced by shame and ignorance.

It’s such an important topic and so little attention is given to it! Besides being weighted every time I go to hospital (appointments, examinations, admission), neither doctors or healthcare personnel ever mention any nutrition guidelines specific to SCD. Only that good hydration and a balanced diet are very important. I have gathered some information available on the Web but what is your experience? What is beneficial and what should you avoid to stay clear from a crisis? Foods. Good nutrition, while essential for anyone, is critical for patients with sickle cell disease. Some dietary recommendations are included here.

Judy Gray was four when the pain first struck. As mysterious as it was excruciating, Judy's anguish confounded the local doctor, who advised her mother to apply liniment. It was not until Judy was a teenager that another doctor informed her aunt of the real cause of Judy's agony - something called sickle cell anemia. The social mores of that time, however, dictated that adults discussed nothing of substance with children. So Judy learned little about her ailment other than it could cause her to die. A frightened Judy simply put sickle cell disease out of her mind and suffered in silence as she went on with her life.Readers will follow Judy's journey through college, a teaching career, a short-lived marriage, and the raising of a daughter while enduring severe pain episodes. All the while, exhaustion was her constant companion. Living with Sickle Cell Disease: The Struggle to Survive is a story of Judy Gray Johnson's perseverance in the face of living with a little-understood chronic illness.

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Najja was born with Sickle Cell Anemia. At age 6 she was diagnosed with Stenosis of the Carotid Artery. When she was 11 she was struck with Moyamoya Disease, a rare neurological disease. At age 13 she underwent a bone marrow transplant that changed her life forever. This book will uplift and inspire you. It is a hopeful and encouraging story of a mother’s undying love and devotion to a young daughter whose strength and courage living with multiple life threatening illnesses goes beyond her years. Kristin demonstrates amazing strength, hope and determination to fight for her daughter’s life amid challenging health concerns. She and Najja, along with family prove that love truly conquers all. This book is a MUST read for any family or individual living with a life threatening illness; a perfect addition for any home library.

My Friend Jen is the series of children’s books written by Jenica Leah with the aim to promote sickle cell awareness and to give young children with sickle cell the peace of mind she didn’t have. It is a great tool for creating a better understanding of the blood disorder.

In this often violent but always introspective memoir, Mobb Deep’s Prodigy tells his much anticipated story of struggle, survival, and hope down the mean streets of New York City. For the first time, he gives an intimate look at his family background, his battles with drugs, his life of crime, his relentless suffering with sickle-cell anemia, and much more. Recently released after serving three and a half years in state prison due to what many consider an unlawful arrest by a rumored secret NYPD hip hop task force, Prodigy is ready to talk about his life as one of rap’s greatest legends.

 Most of us aren’t looking for recipes that add calories. But for families with sickle cell disease, it’s a different story. Because kids and teens with sickle cell disease break down red blood cells faster than other children do, their bodies use more energy and need more calories to maintain health, avoid complications and keep pace with their peers. High calorie foods and extra snacks can be very helpful. Recognizing this, and not seeing another resource that quite fit the bill, the sickle cell team at Nemours/Alfred I. duPont Hospital for Children, led by dietitian Michell Fullmer, developed a unique cookbook offering recipes for appealing calorie-dense meals and snacks. For people with sickle cell disease, a diet that provides plenty of fuel in the form of calories, protein, vitamins and minerals helps to replace red blood cells.

Roald Dahl's Marvellous Children's Charity in conjunction with The Burdett Trust for Nursing and multi-media charity Twin Vision has funded a project to launch Little George and the Dragon, a brightly illustrated, free picture book and app that supports understanding of Sickle Cell. The Little George and the Dragon app and book have been created to explain Sickle Cell to children aged five to ten, in a gentle, humorous way. Families can pay a visit to Waggle Avenue, where Little George learns how to manage his pain during a crisis, with help from his Mum and his friend Dragon along the way. The app and book were inspired by children at Alder Hey Children's Hospital including 13-year-old George (see photo) who has had Sickle Cell since birth.

Chronic pain, health complications and frequent trips to the emergency room are everyday concerns for an estimated 10,000 New Yorkers living with sickle-cell disease.Together, these individuals account for 10 percent of the country’s population diagnosed with the inherited blood disorder. Despite this geographic concentration, patients, advocates and health providers say that funding and overall quality of care continues to fall short in New York State.In 2017, the state allocated $250,000 to sickle-cell in its annual budget. Legislation to boost that funding has been introduced in both the New York State Assembly and Senate, asking for a budget of $3 million.

Sickle cell disease (SCD) is a group of genetic disorders that affect red blood cells, causing them to become shaped like crescents, or sickles. The sickle-shaped cells travel through the blood stream where they can get stuck and cut off blood flow, causing intense pain and organ damage.Stigma occurs when a negative stereotype about a group is attributed to an individual. Health-related stigma refers to the rejection of people with certain health conditions, based on a negative stereotype. In the case of SCD, health-related stigma can be compounded by racism (actual or perceived) and can pose significant barriers to getting appropriate care. For example, the seeking of a specific medication for chronic or acute pain may be perceived as the behavior of a person affected by substance abuse. Or, people who are experiencing SCD-related pain may be falsely thought of as malingers (those who pretend to be sick to get out of their responsibilities).

Last week, I talked about food, herbs and drinks that are beneficial for you as someone with sickle cell. Today, I would like to continue in that vein; in terms of looking after you better. All what I am trying to do is encourage healthy habits and answer questions that I was asked over and over again by people. First things first, sickle cell disease can be detected during pregnancy or soon after birth. Screening for sickle cell disease in pregnancy is offered in the western world to check if there is a risk of a child being born with the condition, and all babies are offered screening as part of the newborn blood spot test, which is a heel prick test. Blood tests can also be carried out at any age to check for sickle cell disease in any individual.

This project is aimed to improve survival and quality of life for children with sickle cell disease (SCD) by instituting early infant diagnosis and establishing standardized care that is sustainable through capacity building of service provision in a comprehensive manner from laboratory diagnosis, prevention, treatment and rehabilitation. The project was implemented in Nigeria, the country with the highest disease prevalence, with the help of UK-based doctors, largely Nigerian migrants. The issue is particularly relevant in the targeted country in that the majority of SCD patients in the UK arrive from Nigeria and West Africa and the high mortality in Nigeria is a deterrent for those patients and families returning to Nigeria.

This project is using innovative web technology and scientific and clinical knowledge to create a novel web-based Case Management Registry product (“webCMR”). Along with this direct intervention to improve the care of patients with SCD in the ED, webCMR will also address broader goals that are intended to support public health policy, the application of scientific knowledge to healthcare, and the focused generation of new knowledge. At the process level, webCMR will be a system for integration, translation, and transformation for addressing health disparities in sickle cell disease, and for addressing deficiencies in the current economics of our health care system.This project, "Empowering SCD Patients with Web Tools to Improve Care Communications," is supported by Small Business Innovation Research (SBIR) Grant Number R43 HL105070 from the National Heart, Lung, and Blood Institute.

Through a small academic setting survey, researchers at Yale University have discovered that sickle cell disease (SCD) patients are using marijuana to relieve symptoms related to the condition. How the substance is affecting these users and whether SCD should be added to the list of conditions that may be legally treated with medical cannabis is still in question. While medical marijuana in the US is legal to alleviate pain caused by several health conditions, only three states (Connecticut, Ohio, and Pennsylvania) include SCD as an approved condition. The Yale survey showed that SCD patients typically use marijuana as an alternative to opioids or supplement other pain relief treatments. The survey included 58 SCD patients (age 21 and older), seen at an academic medical center, who were anonymously surveyed for their use of marijuana, cocaine, and phencyclidine (angel dust) for pain relief. Of the total study population, 42% reported using marijuana within the past two years; most patients said they used it for medicinal purposes to help with pain, anxiety, appetite, mood, and sleep. In addition, 79% of these patients reported taking less of their pain medications after marijuana use.

This site is a collaboration between members of the Emory Center for Digital Scholarship, the Aflac Cancer and Blood Disorders Center of Children's Healthcare of Atlanta, the Emory School of Medicine, and the Comprehensive Sickle Cell Center at Grady Health System, Atlanta, Georgia.

Sickle Options’ website is developed based on input from individuals with sickle cell disease and their caregivers. You can learn about: – Sickle Cell Disease – Hydroxyurea – Endari – Bone Marrow Transplant – Chronic (monthly) Blood TransfusionsFeatures of this site- As a registered user, you may manage your personal files by following these steps. – Click on the triangle at the top right of any page to view this file – Write notes – View saved website content – Print items in your file – Access this file and discuss it with your healthcare provider

Sickle What? is an educational book written in simple language with helpful illustrations to explain complex medical concepts and terminology. Sickle What? arms patients and parents of newly diagnosed children with the knowledge they need to understand and manage sickle cell disease (SCD).Information about what SCD is and how a person gets it is broken down into easy-to-understand terms to help parents better understand and be able to explain SCD to a child – empowering the child to understand what is actually happening inside their body. Sickle What? shows readers how to read and understand a lab report, what action steps to take when pain occurs and the importance of asking questions and communicating openly with doctors.

This book offers the opportunity for people who have Sickle Cell disease to see that they are not alone. An individual reading this book will be able to identify with Mrs. Friend and see that they have common experiences even if they live miles apart. The other thing this book offers is hope. It shows that those with sickle cell disease can overcome the illness and live successful and meaningful lives.

SickleCellKids.org is a joint venture of the Georgia Comprehensive Sickle Cell Center at Grady health System and Cynthia Gentry. The Georgia Comprehensive Sickle Cell Center at Grady Health System is the world's first 24 hour comprehensive primary care clinic for patients with sickle cell syndrome. The mission of the center is to provide preventive comprehensive primary care to the sickle cell population in North West Georgia.

A community for people living with sickle cell disease and also open to those with the trait and families.

When Gail Campbell Woolley was seven, a pediatrician told her mother that Gail suffered from sickle cell anemia, a rare blood disease, and that she would be dead by age 35. While others may have responded to this horrifying news by descending into a fog of self-pity, Gail went in the opposite direction. She decided to live an eventful, exciting life that ultimately included―despite a troubled home life and the systemic racism and sexism of the late 20th century―academic success, an impressive career, a long and loving marriage, and the ability to leave her unmistakable stamp on every person she met. By the time she finally succumbed to her disease at age 58 in 2015, she had ground that doctor's words into dust.Soar, written in the last two years of her life, is Woolley's powerfully inspiring story, and its publication checks the last item off her extraordinary bucket list, which also included traveling to every continent except Antarctica.

One of the first things nurses learn about pain is that it is “whatever the person experiencing it says it is.” Yet when individuals with sickle cell disease (SCD) report severe pain, they are frequently met with disbelief and their pain is often inadequately managed. Also, most individuals with SCD are black (though the disease can affect any race or ethnicity) and many report experiencing discrimination during such interactions. In fact, race-based discrimination for patients with this disease contributes to negative provider attitudes, longer emergency department (ED) wait times, insufficient treatment, and lack of research funding. SCD describes a group of inherited blood disorders that often cause hard, sticky, and sickle or C-shaped red blood cells. It affects 90,000-100,000 Americans and millions globally. The most prevalent clinical complication of SCD is sickle cell crisis, an episode of severe, acute pain caused by occlusion of small blood vessels by the sickle-shaped cells. These account for approximately 230,000 ED visits and over $1.5 billion in health expenditures annually.

“THE GIRL WITH THE LION HEART” is an intriguing, inspiring, motivating, heart-felt, mind blowing, memoir which shares the story of a young woman by the name of Elvelyna B. Beaubrun struggling yet determined to reach her goals despite her obstacle Sickle Cell Anemia hindering her. Throughout the painful crisis and numerous hospitalizations, Elvelyna makes it her mandate to rise above the odds and pursues the passions and desires of her heart. When Sickle Cell Anemia knocks her down, she makes it her mandate to never stay down, but rise up and work harder, be stronger, build up perseverance, through the excruciating pain crisis associated with her illness. This exceptional story is a must read! It is the story of courage, the ability to withstand obstacles, and endure until the end.

This book offers a unique perspective on living with the pain of sickle cell disease. The author tells her story, painting an image of the disease as a stalker waiting for its opportunity to strike. It is a story of suffering, faith, and success.

Uncertain Suffering provides a richly nuanced examination of what this fact means for health care in the United States through the lens of sickle cell anemia, a disease that primarily affects blacks. In a wide ranging analysis that moves from individual patient cases to the compassionate yet distanced professionalism of health care specialists to the level of national policy, Carolyn Moxley Rouse uncovers the cultural assumptions that shape the quality and delivery of care for sickle cell patients. She reveals a clinical world fraught with uncertainties over how to treat black patients given resource limitations and ambivalence.Her book is a compelling look at the ways in which the politics of racism, attitudes toward pain and suffering, and the reliance on charity for healthcare services for the underclass can create disparities in the U.S.

I am a sickle cell warrior, a sickle cell advocate and a medical doctor. I write this article to enlighten people on aspects of sickle cell awareness which are mostly ignored. First, I will be referring to sickle cell patients as sickle cell warriors because I believe we truly define the word ‘warrior’.A particular question that has been on my mind lately is, “Who will fight for the sickle cell warriors?” Who? I see Nigerians impressively coming together, joining forces with activists and celebrities to fight rape, injustice and many other social vices. But no one is truly fighting for sickle cell warriors. Many sickle cell warriors are preoccupied with their health challenges with no time to fight for themselves, while those that are not preoccupied cannot stand the stigma associated with the disease. They prefer to keep quiet.

Ms. Dobson says that her worst symptom is fatigue, but by managing her overall health, Ms. Dobson has been largely able to avoid the strong painkillers that are so common in sickle cell care. Ever since her treatment at Jamaica Hospital, Ms. Dobson has pursued a career in nursing. She is dedicated to improving the care of all of her patients, but particularly to increasing awareness of sickle cell disease and the best ways to treat its symptoms.

Join the Sickle Cell Disease Association of America, Inc. (SCDAA) and singer,  actress, and advocate Jordin Sparks by becoming a member of  Generation S. From your earliest battle to your latest victory, and everything in between, share your story to help shape the conversation and increase awareness about sickle cell disease for generations to come.Share your story about sickle cell disease by November 30th. Check back to see stories from around the country come to life. Up to 5 participants will be chosen to meet Jordin Sparks and work with a professional filmmaker on a video about sickle cell disease.  

There are approximately 4.3 million adolescents with special health care needs in the United States, accounting for nearly one in five adolescents in our country. Special health care needs range from mental health problems to sickle cell disease to cerebral palsy. Although the experiences of these adolescents differ, they often share a need for additional support services – like help managing a range of medical appointments or access to special therapies – to assist them in achieving their highest potential in adulthood.During a one-on-one visit with the YCHW, Jessica explained how making phone calls causes her anxiety, expressed confusion about deciding between the insurance plans offered at her job, and indicated that her goal is to return to college. Together, Jessica and the YCHW identified two short-term goals and one long-term goal. The first short-term goal was to practice making polite and effective phone calls to providers and pharmacies using a script from the YCHW.

I left after three hours, but after that I found myself checking on him constantly, every 30 minutes or so. He kept saying he was fine. But a few days later, he ended up in the hospital. When I went to visit him, it was a shock — I had never seen a “sickler” before. I saw the yellow eyes. I saw how skinny he was.He kept wincing from the pain, but putting up a brave act. “They’re saying my kidneys are failing and stuff,” he finally said. I was so freaked out.A few mornings later, I planned to go back and bring him some Ogbono soup, his favorite. It’s a concoction of ground African bush mango seeds, cooked onions and crayfish with dark, leafy vegetables swimming in bright red palm oil. The plan was for my mom to make it but to say that I made it. So we began cooking the soup. Then we boiled water to cook semolina flour for fufu to go with it.

Beverly Ndukwu was diagnosed with sickle cell disease when she was two years old and living with her family in Brandon, Man. For years, she longed to find someone else who shared in her experience with the disease. Then when Beverly was 14, her little sister Andrea was born, and she had sickle cell too. But one morning in November 2007, she woke up with flu-like symptoms. By the next evening she was gone.Watching Andrea suffer with sickle cell disease changed things for Beverly. Later she was introduced to the Sickle Cell Disease Association of Canada. That was where Beverly found the community she'd always longed to find. Beverly then co-founded the Sickle Cell Association of B.C. and started advocating for education around the disease. Beverly started an organization called the Sickle Circle of Manitoba to raise awareness and build community for Manitobans living with the disease. Beverly is now actively involved in working for people with sickle cell disease.

On a frigid New York Friday evening in February in the Westchester County suburb of White Plains, former DePaul great Billy Garrett Jr. finds himself at peace warming up inside the Westchester County Center for the Westchester Knicks game against the Greensboro Swarm that night. His pre-game routine is not something out of the ordinary as he stretches and puts up some shots; but for all the blood, sweat and tears he has shed at Morgan Park High School and at DePaul, he values the precious opportunity that has been afforded to him in the NBA's G League. As a former Big East Freshman of the Year, a 1,000-point scorer and DePaul's all-time leader in made free throws, Garrett feels blessed for the chance to realize his dreams in the NBA's developmental league.

When she was growing up in St. Petersburg, Florida, Brandi Abernethy was so often sick from her illness that school officials demanded she be home-schooled through her middle and high school years. But Abernethy didn’t let that put a damper on her academic or civic achievements—or, for that matter, her social life. She graduated a semester early, all the while volunteering for her local Sickle Cell Association—at one point becoming the “poster child,” raising awareness about the disease throughout the community. She’s now fulfilling her dream to become a hematology-oncology nurse while raising her four-year-old son.

That day in the hospital, my intuition was confirmed: A few minutes after I met the man in the waiting room, a nurse called me into a room to comfort him. My frequent trips to this particular hospital have made me a ‘celebrity patient,’ and at that moment, they needed someone to motivate the young man who I learned also struggles with SCD.As I began to share comforting words, I noticed a few things that disturbed me. This man was alone and almost penniless; I was told he had a serious health issue that was only aggravated by sickle cell.That day, I had entered the hospital with complications from my own diagnosis, but my issues were nothing compared to his. Learning of his struggles reminded me of the phrase, “I cried because I had no shoes, until I saw a person without legs.” Sickle cell is painful and financially draining for anyone, but this man’s story particularly moved me.

Jordan McDowell, a 2014 alumnus of the University of Kentucky, has always been interested in the ways having a child with a chronic illness affects families. Part of this interest comes from his own experience with sickle cell disease.McDowell knows first-hand the experiences and difficulties a child with a chronic illness can have when transitioning from their parents' care to a new environment like college. As a child, McDowell was diagnosed with sickle cell disease, a severe hereditary form of anemia in which a mutated form of hemoglobin distorts the red blood cells into a crescent shape which can block blood flow and cause severe pain.

Darryl Watkins has the HbSS variant of sickle cell disease. An inspiring, uplifting individual, he is married with three children, all of whom carry the sickle cell trait. Watkins says that he began to understand the profound impact sickle cell disease would have on his life at the tender age of 6 or 7. He wanted to participate in peewee sports and his parents wouldn’t allow it, because becoming overheated or dehydrated could cause serious health problems for him. Sickle Cell Disease's Legacy of Pain and Loss Watkins lost his sister to sickle cell disease when she was just 17 years old. At the time, he was still only a child himself. Dealing with the pain of this disease and watching a loved one suffer and die from it has proven especially challenging for Watkins.

I am Dr. Lakiea Bailey, research scientist, sickle cell disease patient, patient advocate and activist.Diagnosed with sickle cell disease at age three, I am a passionate advocate for those living with rare diseases and am committed to serving as a voice of encouragement within the sickle cell community. Obtaining a diagnosis was an uphill battle for my mother. I was born in the late ‘70’s, prior to widespread newborn screening, when trait-related symptoms were dismissed as simply having “weak blood.”

Miracle kid Jordin Jackson speaks to living with sickle cell disease, raising money for her children’s hospital, and how to stay positive through pain. Jordin Jackson has a genetic blood disorder called sickle cell, which causes severe and unmanageable pain.The body makes sickle-shaped red blood cells instead of round cells that gather together and prevent oxygen from getting to the most important parts of her body.  Jordin is the 2017 Children’s Miracles Network Hospitals Champion from California.

One 7-year-old who suffered his whole life from sickle cell disease now has a second chance thanks to his older sister's selfless donation.

My name is Noah Alexander Williams and I am living with sickle cell anemia disease. Sickle cell isn’t really a widely talked-about disease but it’s so real and epic that it should be.Sickle cell anemia disease is a grasping chronic sickness that doesn’t let go. Unfortunately I have it and have had it since I was born. I don’t know life without sickle cell disease and therefore I don’t know life without pain — the daily aches, the crucial crises that come out of nowhere. Sickle cell is never predictable. Of course this disease has impacted my life beyond words. I’ve learned to cope with it.

Kyriako Damavoletes has HbS beta thalassemia. This means he received a HbS gene from one parent and a beta thalassemia gene from the other. Both Damavoletes and his younger sister have HbS beta thal. He knew he was different by about age 4 or 5, but it wasn’t until middle school that he truly understood the impact the disease would have on his life.“At about age 12 or 13, I realized this disease would carry a lot of weight in my life. I saw my older siblings driving and getting ready for college. I thought to myself, ‘Am I going to be able to get a license, go to college, have a job? Like everyone else?’ I just wanted to have the chance others had.”All grown up now, with an education and license to drive, Damavoletes works in the field of information technology.

My name is Andre Harris. We are in Houston, Texas. Well, my connection with sickle cell disease is first that I am a sickle cell patient and also I am an advocate for sickle cell disease. And so this is very important to me because I am a patient and a male so I identify with all of the areas that we're talking about today. Yes, so black men, already dealing with a lot of stigmas, first being black and secondly being male. I would say to doctors, nurses, health care providers within the emergency room setting that they need to learn their patients to as individuals and not as a statistic. And many providers treat their patients just to get them out of the door in the emergency room setting. But if they learned who they were and took the time to understand what brought them there that they'll be able to provide them with the best quality care as possible.

My name is Marissa Cors, I have sickle cell disease. I was diagnosed with sickle cell disease at six months of age. I am now 40. Sickle cell has been a part of my life every day of my life. The treatments you are supporting and funding here at CIRM are very important. They offer a potential cure to a disease that desperately needs one. I want to tell you just how urgently people with sickle cell need a cure. I have been hospitalized so many times that my medical record is now more than 8 gigabytes. I have almost 900 pages in my medical record from my personal doctor alone. I live with pain every day of my life but because you can’t see pain most people have no idea how bad it can be.

Once a month, she undergoes a grueling process called hemapheresis. All of the blood is removed from her body, the platelets and plasma are separated out and returned to her, and then Peterson is given eight to 12 units of packed red blood cells. This helps to mitigate the pain she lives with every day.“I don’t know what it means to be without pain. I have nothing to compare it to,” Peterson tells The Root from her bed at Doctors Community Hospital in Greenbelt, Md. “I have what I call my normal pain, and my pain where I need to be in the hospital. They always ask what your pain scale is from 1 to 10. I function on a normal person’s 7 to 8. It’s like my 2.”

Growing up, Vismel Marquez wanted to join the police department and eventually work his way up to detective. Now almost 22, Vismel, says he knew that his dream job wasn’t to be. It wasn’t that he lacked the drive, courage or smarts. The fault is in his genes. Vismel was born with sickle cell anemia. This inherited disease causes a mutation in hemoglobin, the oxygen-carrying protein in red blood cells. The defective hemoglobin causes some red blood cells to shape-shift, transforming from healthy donut-shaped cells that move easily through the bloodstream into scrawny, sickle-shaped versions. And because these misshapen red blood cells are rigid and sticky, they can’t move through the small blood vessels (microvasculature).

I recently read a post on the Sickle Cell Warrior's Facebook page from a concerned father. His teenage child with sickle cell is prone to angry outbursts. This child is far more temperamental and short fused than his other children were at the same age. He wondered if this was typical of sickle cell children. Looking at my own life, I know I went through several periods when I was very angry. The first angry-phase I recall going through was when I was fourteen. For whatever reason, I took out all my anger and frustrations out on my older sister. At times, I was very cruel with my words; it’s one my biggest regrets in life.

At 32 years young, Shakir Cannon is not only on the frontline of sickle cell disease research as someone living with SCD, but also as a dedicated advocate. As he puts it, he’s not a patient of health care but rather a partner in health care. In 2015, Cannon co-founded the Minority Coalition for Precision Medicine (MCPM) “to mitigate/eliminate health disparities of minorities by expanding the awareness and use of “Precision Medicine” to increase personal health and reduce individual and government expenses in providing crucial health care.” In February 2016, Cannon was among an elite group of individuals invited to the White House to participate in the White House Precision Medicine Initiative (PMI) Summit to find new, ‘precise’ ways of addressing health care research.

For years, NFL wide receiver Santonio Holmes didn’t know why his arms, legs, and back sometimes cramped up when he played football. But 12 years ago, the birth of Holmes’ son, TJ, provided an unexpected answer.A few months after his birth, TJ suffered from his first “crises,” or periodic episode of intense pain. This prompted a blood test that revealed the newborn had sickle cell disease (SCD), an inherited blood disorder passed down to him by his father and mother.When both parents possess the sickle cell trait, there is a 25 percent chance the baby will be born with SCD, according to the Sickle Cell Disease Association of America.

June 19th is World Sickle Cell Day. We sat down with Andrea Matthews, a parent of a child with sickle cell disease to share her family’s journey with this disease. If you’re unfamiliar with sickle cell disease (SCD), you may be surprised to learn that over 275,000 individuals a year are diagnosed with the condition in the world. SCD is an inherited blood disorder in which the body doesn’t produce enough healthy red blood cells to carry adequate oxygen throughout the body. The condition causes anemia, episodes of pain, swelling of the hands and feet, frequent infections, delayed growth, and vision problems. It has been estimated that approximately 100,000 people in the United States are affected by SCD.

 When Janoi Burgess was a child, he thought doctor appointments were fun.“I used to love it because they had a section where you could play games,” said Burgess, who was born with sickle cell anemia, an inherited blood disorder. “They were really nice and friendly.”But when he turned 21, the South Florida resident could no longer go to his pediatric specialist. Instead, he “bounced around” to various primary-care doctors for adults, none of whom seemed well versed in the details of his condition. When he had a painful sickle cell crisis two years later, his only choice was to go to a hospital emergency department, where, he says, he waited three hours for pain medication.

Marley was diagnosed with sickle cell anemia at birth—a painful and hereditary condition in which the red blood cells are abnormally shaped like a crescent. The sickle cells are stiff and sticky and tend to block the flow of blood and oxygen in blood vessels of the limbs and organs, causing pain and organ damage. “I used to have headaches that wouldn’t be like normal headaches,” said Marley. Tirzah helped explain, “Marley would just scream from the discomfort.”

Nine year old Jacob has sickle cell disease. His mother Sheree Hall doesn’t just understand the findings from the sickle cell patient experience survey, she lives them. As a working mum of two, navigating the healthcare service as a carer of a child with a long term condition, many of the experiences and challenges identified in our recent report are all too familiar.In the below interview Sheree shares her day to day experiences of sickle cell disease, how it impacts family life and what more support and service improvements would mean to her personally. Her story is arresting, enlightening and highlights the importance of capturing and acting on people’s experiences in order to improve care.

Eighteen minutes in with no break, Billy Garrett Jr. finally looks gassed, wiping sweat from his brow while visible sweat stains mark the back of his shirt. Fatigue hits, but not hard like a Mike Tyson punch — more like a Floyd Mayweather Jr. jab. The NBA hopeful starts to cut corners during a cone drill, barely lifting his feet, which are adorned with “Chicago” edition Nike Hyperdunk Low sneakers complete with graffiti and “Chi” on the heel.A professional athlete struggling through a workout is nothing to write home about, but special attention has always been paid to Garrett, 23. When he was born in 1994, he was diagnosed with sickle cell disease, a hereditary blood disorder that causes normally round and healthy red blood cells to mutate into crescent- or sickle-shaped cells that can either die altogether or stick to one another and disrupt the flow of oxygen throughout the body.

 Mikeia Green was born with Sickle Cell Disease. She shares her experience of how she managed sickle cell disease (SCD) in college. Ms. Green’s mother always took care of her but Mikeia left her home in Arizona to attend college in California. This brought a big change in her life when she started dealing with day to day struggles.While in college, Mikeia never let her SCD condition limit what she could accomplish. She was involved in a variety of service and cultural organizations, tutored students, held a work-study job, and made time for the gym to stay healthy.Mikeia reached out to the Sickle Cell Disease Foundation in California (SCDFC) for support and resources to help her find a doctor. She also connected with a social worker from the Children’s Hospital of Los Angeles to help her transition from her previous pediatric care to an adult care specialist. 

  Sickle cell and beta thalassaemia are inherited recessive conditions. 'Recessive' means a person can only inherit the condition if both parents are carriers. Each child born to a couple who are both carriers has a 1 in 4 risk of having the condition and a 1 in 2 risk of being a carrier. If only one parent is a carrier, their children cannot inherit the condition itself, but they still have a 1 in 2 chance of inheriting carrier status. Being a carrier will not affect the child's health. If a woman discovers during pregnancy that she is a sickle cell or beta thalassaemia carrier, she will usually be advised to tell her partner and suggest he also has a screening test for sickle cell, thalassaemia and other variations (such as haemoglobin C, E, D or O Arab). For many couples, the test will show the male partner is not a carrier, and their baby will not inherit the condition.  

Sickle cell disease afflicts about 100,000 people in the United States, many of them African Americans. It is an inherited blood disorder that can cause frequent infections and chronic pain. It's a disease that hits home for me and my family. My youngest son, Teemer Barry, was diagnosed with sickle cell disease when he was a baby. This past fall, he went off to college. Most importantly, Teemer has had only one serious pain crisis. Going away for school while nursing a critically-ill disease can be especially hard for a young student. The goal is to help devise a care plan of independence that will hopefully lead to college graduation.

Recently, I went to a Sickle Cell user group meeting. I had never been to one and so did not know what to expect; well it was well attended by SCD patients, their partners, mothers, (a few mothers on behalf of their children); a variable mix. There were about six medical staff (hematology consultants, psychology doctor, critical nurse specialist, head of hematology). A good balance of them versus us. Now the reason why I am writing about my experience is because of my interaction with other people there. There was a lot of talk about: SCD and psychology; new drugs in their testing stages and therapies available, like gene therapy and the most interesting one was about self-management.

Sickle cell patients find it very tough to get jobs in general as I have been told. They say this is prevalent in private organisations especially because the patients must take time off to go to the hospital regularly or take time off work when sick quite often. As a nation who has the highest number of people suffering from sickle cell, I believe employers could do well to employ people who can work well but perhaps have a health condition. This is so important as I consider that having those who may have one sickness or the other will help us to know more about various illnesses around us, like sickle cell.

Mr. Spates believes in living a full life with this disease instead of feeling sorry for himself.  He understands that there will be times in which he’ll feel extremely bad, but he also knows that in a few days he’ll be better again.  During his childhood, he was told that he wouldn’t live past the age of 11.  However, he refused to comply with the doctors’ restrictions and limitations.  In high school, he participated in football and track & field.  Mr. Spates’ family instilled a powerful belief in him at a young age that the disease wouldn’t prevent him from living.   It’s this determination, resilience, and courage that propelles him throughout his life.

A Friday morning at 11 o’clock. I’ll never forget! A voice said ‘I’m sorry your son is suffering from the most severe form of sickle cell disease, homozygous SS. You should take him immediately to hospital,” explains Jenny. Taylor was nine months old.Jenny couldn’t imagine a worse diagnosis or a worse way to receive it. “It was said these children did not reach the age of five, so I thought I might as well end it there and then,” she says. The family lived on the sixth floor and Jenny thought the only one thing to do was to take her son in her arms and jump. But when she saw him smiling at her from his cot she decided she was going to fight for him instead.“Sickle cell disease in our house has become a family affair: not only my husband and our other children, but my brothers, sisters, my mother, my mother-in-law, everyone is fighting with us,” says Jenny.

For more than a year, NeDina Brocks-Capla avoided one room in her large, brightly colored San Francisco house — the bathroom on the second floor. "It was really hard to bathe in here, and I found myself not wanting to touch the walls," she explains. The bathroom is where Brocks-Capla's son Kareem Jones died in 2013 at age 36 from sickle cell disease. It's not just the loss of her son that upsets Brocks-Capla. She believes that if Jones had gotten the proper medical care, he might still be alive today. Patients and experts alike say it's no surprise then that while life expectancy for almost every major malady is improving, patients with sickle cell disease can expect to die younger than they did more than 20 years ago. In 1994, life expectancy for sickle cell patients was 42 for men and 48 for women. A 2013 study found that life expectancy had dipped to 38 for men and 42 for women in 2005.

I was born into a family of four (second born) children where my brother, our first born also suffers full-blown sickle cell disease. My two younger siblings do not suffer the condition, one having normal hemoglobin while the other is a carrier but totally asymptomatic for the disease. My family has learnt how to work around my brother and myself especially when we fall sick and require extra attention. While younger, the burden of sickle cell disease on my body seemed to be greater. As I grew, I’ve learnt how to take care of my body and how to listen to it and look out for any impending complications or infections that could lead to a crisis episode. I now suffer less pain and I’m leading a much more productive life.

 As a mother, I know that I have a responsibility to vote on Election Day for many reasons, and when I walk in that booth to cast my ballot, I will be thinking of not only my own children but other kids and their parents all across the country who deserve access to quality, affordable health care.As a parent, my main responsibility is the health and safety of my daughter, Chase, and my son, Chance. I’m sure parents everywhere can relate to that. As nurturers and providers, we embrace our role to protect our loved ones but we also need to make sure that our laws and elected officials reflect our priorities and our values.And as I personally continue to battle sickle cell disease, it is very clear that my own health is very much tied to me being able to take care of my children. That’s really what the health care fight and this election is all about—the well-being of our families.

A husband wouldn’t have to cradle the college sweetheart who became his wife in his arms as she takes her last breaths of life. A life, bear in mind, spent 36 years in a body too compromised by sickness to, at one time, deliver alive the twins she had yearned to leave with her husband as a legacy of their love.In a much better world, a stoic 7-year-old who lost her spleen and gall bladder at 4 wouldn’t need monthly blood transfusions to prolong the life she had with her family among the bucolic Colorado communities bordering the Rocky Mountains. While a violin prodigy just four months her senior endures his own life-sustaining transfusions in a mountain-outlying city of the Carolinas. Having regained the ability robbed by three strokes in two years to play the instrument he first picked up at age 2, his parents now grapple to raise money for the bone marrow transplant they’re convinced will cure him.

Kenya Buckley made a promise to honor her mother’s death by helping others. Today, she is keeping that promise through the Carol’s Promise Sickle Cell Foundation, which Buckley founded and launched in 2017. Her mother, Carol Groover, passed away in 2005 from sickle cell disease (SCD). The mission behind Carol’s Promise is to spread awareness, be an advocate, and support those who have been affected by the disease.And, thanks to Buckley’s storytelling talents, the foundation is becoming known nationwide. She recently wrote a story about her mother as part of Grammy nominee and film star Jordin Sparks’ Generation S project. Five individuals from across the United States were selected to tell stories about being affected by SCD, and she was one.

I wake up with an active volcano for a chest. When I breathe in, even lightly, I hear wheezing for miles. I don’t want to call the doctor but I call the doctor. Fifteen minutes later a receptionist leaves me a voicemail: If I can get to the surgery within the hour, I’ll be seen. I’m not sure how I make it down the stairs – and into the car and through the 20-minute journey and out of the car and across the courtyard and into the reception and down the corridor to knock on the doctor’s door – now that my limbs are made of lead. I collapse into a chair, sit feebly and at a nonsensical angle. This chair is too hard for patients, I think. Are the chairs always this hard?

AJ had his first sickle cell crisis at about 8 months. We didn’t really know what to expect with a crisis, but the early newborn screening test was helpful because we knew he had sickle cell disease. When he had his first painful sickle cell crisis we would never have known to take him to the hospital. We probably would have just thought he was crying to be crying and put a bottle in his mouth. We knew something had to be wrong with him and we didn’t take it lightly. We took him to the hospital and they said that he was having a crisis in the top of his foot. It was important to have the newborn screening done so that we knew to watch for these things. If we hadn’t had the newborn screening done we wouldn’t have known what was going on with him and sought appropriate care right away.

After a recent stint in the hospital, I began researching documentaries and photo series about sickle cell. Disappointed by what I found - sad stories, stories that narrow in on the pain and, stories that tell how there is no cure; I decided it was time for a different narrative. One of strength, hope and joy.  People living with sickle cell often call one another warriors. So I contacted my closest warrior friends and began discussing what it means to be a Sickle Cell Warrior.Being born with Sickle Cell Anemia has its ups and downs. This disease has humbled me, and through that humility I've developed a better spiritual relationship with GOD. My image represents a fighter who wins. 

In 2013, an inquest found a failure to follow basic procedures contributed to the death of a young woman called Sarah Mulenga after she called the emergency services while having a sickle cell crisis. Two trainee paramedics refused to take the 21-year-old to hospital, her condition deteriorated, and she later died.The high-profile case led to a number of changes for the better, but there is still a long way to go, those who have the condition say.Kehinde Salami, 36, told BuzzFeed News that many new treatments were still not being made available on the NHS. “The care and treatment for sickle cell has gone a very long way in the last 15 years. However, there is a long way to go, especially as sickle cell medications currently [available] are not free on the NHS and there definitely needs to be more progress.”

 Many storms have come and gone – but Tionne “T-Boz” Watkins persevered and is finally opening up about her journey. The TLC singer will release her memoir, A Sick Life, with Rodale in September 2017, PEOPLE can exclusively announce.“I want to hopefully get stuff off my chest and inspire someone at the same time,” says Watkins, 46. “A lot of things have happened in my life that will come out in this book that a lot of people don’t know about, that I’ve never talked about. There are a lot of major life changes that I’m so, so, so blessed to have experienced.”

Adrienne Shapiro is a patient advocate, co-founder of the Axis Advocacy SCD. Like the three previous generations of mothers in her family, Shapiro gave birth to a child born with sickle cell disease. Yet the news came as a complete surprise - not because she was unaware of her family history, but because she had received a false negative result from her sickle cell disease/trait test. It wasn’t until her daughter Marissa was six months old, and her family got word of her diagnosis in a letter from the California New Born Screening Program, that she knew. “It was shocking to receive the diagnosis in the mail. We did not believe it at first.” The confirmation marked a turning point in Shapiro’s life. She now had a single goal – keeping her daughter Marissa alive until science found a cure. She became a patient advocate and co-founded the Axis Advocacy SCD patient education and support website.

Cassandra Trimnell is a patient advocate, Executive Director of the Sickle Cell 101. When Cassandra Trimnell was born in 1987, she was the first child diagnosed with sickle cell disease through Iowa’s newly implemented newborn screening program. “My mom, like most others, didn’t know she had the sickle cell trait until her beautiful baby was born with this ugly disease,” said Trimnell. But because of this newfound awareness, Trimnell was able to get the attention and care she needed, and she grew up to become a fierce advocate for others with the condition. Trimnell founded and is the executive director of Sickle Cell 101, a non-profit organization that specializes in sickle cell education, primarily through social media. She is convinced that a lack of knowledge about the disease—not only among the population at large, but among the medical establishment and patients themselves — has led to a disturbing silence about the disease. “I want people to realize the importance of knowing their trait status,” said Trimnell.

At six months of age, Deidra Flowers-Williams was diagnosed with sickle cell disease (SCD). The next four decades of her life were a tale of emergency room visits and long hospital stays, framed by constant, debilitating pain. By 2015, prostrate with the pain, unable to walk from her bed to the bathroom, Flowers-Williams grasped firmly at a last straw: a National Institutes of Health (NIH) clinical trial testing the use of stem cells to cure sickle cell in adults. She was patient #43 in the trial. On September 9, 2015, she tweeted a picture (link is external) of herself undergoing a blood transfusion with the caption: “One day this will no longer be my life! #SickleCellAwareness.” Two months later, on November 19, that day came: She received an experimental stem cell transplant and is now free of SCD.

 Jeffrey Zuttah, 33, is a patient advocate, business development professional for the technology firm Quartet. In 2003, Jeffrey Zuttah was captain of state championship football team at his college and an academic whiz kid who dreamed of playing college football.An All-American, he won a scholarship to the University of Michigan, but because of his disease, he wasn’t allowed to play. Zuttah transferred to Stanford University with his goal still intact. But less than a year into his football career, an SCD crisis ended his dream.Zuttah, then, earned a degree in public policy and then an M.B.A. with honors from Harvard. Presently, he works with a firm that tries to improve outcomes for patients with concurrent chronic issues, and he volunteers as a patient advocate in local and national SCD organizations. 

Jennelle Stephenson was diagnosed with SCD at birth, and it has been a challenging journey ever since. She has had pain episodes so intense that she temporarily lost mobility in her extremities. Most of her crises occur out of the blue, without warning. “Living with this disease is a scary, unpredictable rollercoaster. Every morning when I wake up, I have to plan my day as if I were going to go into crisis. Whatever I do and wherever I go, I have to make sure that I have a plan and the proper supplies if a crisis were to occur.” Despite the challenges, Stephenson is currently pursuing a master’s degree in health care administration.

Kirti Dasu was born in South East India and was diagnosed with SCD at 4 months old. His two younger siblings were also born with the disease. In 1988, knowledge of sickle cell was limited everywhere, but in Dasu’s community it was almost unheard of. His younger brother died of sickle cell complications at age 3. “[The doctors] didn’t know much, so they treated him the way they treated me, and it was fatal,” Dasu said. His family was poor and, because Dasu’s condition was acute, repeated visits to the hospital strained their meager resources. Often, the kindness of neighbors seemed to be an answer to his mother’s prayers, as she sat on the doorstep wondering how they’d make it to the hospital this time … and how they’d afford the treatment.

Mercy Mendoza was born in Honduras, and for the first three years of her life, she suffered from a condition that caused swelling, pain, and immobility and nearly destroyed her health. Multiple doctors tried to help but failed, and fearing the worse, Mercy’s grandmother went and bought a burial plot. Finally, a doctor who had been trained in the United States recognized Mercy's condition: It was sickle cell disease. Knowing that their daughter would need special care, Mercy’s parents brought her to the United States and they found Mercy the pediatric care she needed to treat her disease. Years later as a teenager, Mercy became a counselor at a camp for kids with sickle cell disease. There she taught others to manage the condition that nearly claimed her life. Today Mercy lives in Houston with her parents, brother, and two sisters. She is the only one in her family who has the disease. Her brother and one of her two sisters have the trait. She currently volunteers for the Sickle Cell Association of Texas Marc Thomas Foundation, where she also conducts specialized outreach to the Hispanic community in Texas to raise awareness about the disease.

Jennifer Nsenkyire, who is originally from Ghana, came to the United States in 1995 seeking a better life for herself and her family. She earned a bachelor’s degree in finance. She now holds a full-time accounting job in a private firm. In her spare time, she enjoys walking several miles a day. Unimaginable hurdle: Nsenkyire has suffered from the complications of SCD for as long as she can remember. As a teenager, she experienced excruciating pain for days at a time and had to be hospitalized at least once a month due to her condition.

When Marqus Valentine went to junior college, he serendipitously took a film class, fell in love with the medium, and decided to use it to document his daily struggles with SCD, which have been lifelong. He posted his musings online and eventually turned them into a mini-documentary. It was his way of honoring the many friends he’d lost to the illness—and it led to his co-founding, with his sister Ashley Valentine, of Sick Cells. It is an organization that encourages the sickle cell community to influence public policy and awareness by sharing their own stories. Marqus Valentine’s dedication has grown—he personally appeared before a Food and Drug Administration (FDA) panel to lobby for sickle cell drug development, and last year made a successful pitch for approval of the drug Endari (L-glutamine oral powder).

Rodrick Murray was 3 months old when he was diagnosed with SCD. This condition became the backdrop of his life, often hindering it. Born in Chicago, he met his second wife, who is from Maryland, in 2002, and in 2005 he moved to the state, home of NIH. Murray went to a sickle cell convention in Washington, D.C., and ran into many people involved with the research. After that, he participated in several clinical trials. In June 2015, he went through the gene therapy protocol that changed his life. “I’m feeling good. My numbers [hemoglobin, blood iron] are good!” Murray has a son, 21, and a daughter, 19. Both have the sickle cell trait.

Tesha Samuels was diagnosed with SCD at the age of 3 years. She almost lost her life several times over the years, and she recently suffered a miscarriage. But she is well aware that others are worse off than her. She has felt well enough to work consistently since she was 17, and she has been with the D.C. Department of Corrections for 10 years. Unimaginable hurdle: Every day, Samuels wakes up and goes to bed with an overwhelming amount of pain. It is always at the forefront of her mind, and she doesn’t remember one day without pain for more than 20 years. “But I try to not let it get me down. I try to do as much living as I can.”

During a long hospitalization in 2005, Tosin Ola went on a search for a sickle cell blog - something that could connect her to others like her. A practicing nurse then, she couldn’t find what she needed, so she started her own, and it became so wildly popular that two years later, Ola launched the Sickle Cell Warriors website, a portal of information for sickle cell patients, families, and health professionals. She also started a Facebook page - now with nearly 21,000 members - all while working on a dual degree in nursing and business administration and raising two boys. Her activism around building community has garnered Ola national attention and endless kudos.

It would be really unfair for me to compare ones pain with mine but honestly, I don’t think there’s any pain that surpasses that of a Sickle Cell Crisis. I remember when I was a kid, I used to have frequent episodes of pain. I did not know much about sickle cell then but I knew I was different. I was treated differently. I did not understand why I wasn’t allowed to run around like every other kid. Why I wasn’t allowed to play as much. I missed school a lot too. I wasn’t allowed to do strenuous activities like my siblings. I just knew I had sickle cell, but why was I being treated differently! It was just a disease like any other right? Wrong!

 Seventeen-year-old Ja’Vionte “Tae Money” Allen draws inspiration from his personal battle with sickle cell disease in his lyrics, but much of his drive to pursue a career as a rap artist comes from encouragement from his nurses at Akron Children’s Hospital. “It takes persistence,” Allen said of his music career. “My family tells me I just have to grind for it. Anything you want in life you have to grind for. It’s going to come.”Allen was born with sickle cell disease, a condition that prevents red blood cells from carrying adequate amounts of oxygen throughout the body. What typically results are episodes of pain in the joints and bones, swelling, infections, and vision problems.

 In college I raised $52 for cancer. I walked miles in my achy body because I supported cancer research, but also because it was the most relatable cause I could find. Like sickle cell, cancer patients called the hospital their second home.Everyone cares about something outside of themselves. It’s the definition of humanity. It’s the reason there are advocates who walk miles for a cause.However, I have found an undeniable shortage of people advocating for sickle cell. Our biggest supporters are the ones fighting with and for sickle cell disease, a blood disorder that produces misshapen red blood cells that deprives oxygen to very organs needed to survive. Alongside us are few; only those close enough to have a personal stake in our health.

Tre Adegoroye is 17 and was diagnosed with sickle cell disease at birth. The condition affects red blood cells and by the age of nine, Tre and his twin brother had both had strokes. Prodigy, the rapper from hip-hop duo Mobb Deep who passed away on Tuesday, also suffered from the disease.The NHS has launched an appeal for black blood donors to come forward to treat patients of the disease, which is also the fastest growing genetic disorder in the UK.Tre has been to hospital to receive a blood exchange, which is the term used for a full blood transfusion. Many sufferers need that on a regular basis to treat the condition. Tre has required 10 blood exchanges in the last six months, which is the equivalent of 120 units of blood or 120 separate blood donations from members of the public.

When you meet 2-year-old Evelyn Islam, the first thing you notice is her grin. And her friendliness. And her curiosity.You can't help but smile as she mischievously steals phones to play with. You can't help but be drawn into a conversation as she explains her surroundings to you in earnest toddler-speak. And you can't help but play right along with her as she shows you her collection of beads from Beads of Courage, an organization that supports children who have serious illnesses.Although Evelyn's sickle cell anemia is a serious chronic medical condition, the fact that it isn't obvious from the outside makes it easy to see Evelyn for the person she is. It's easy for her to be defined by something other than her illness.

Cassandra Trimnell was diagnosed with sickle cell anemia in 1987 when she was just a baby.She inherited the gene that causes this disease from both of her parents, meaning she has sickle cell type SS. This means she can experience the worst symptoms — including fatigue, extreme joint pain, anemia, and infections — at a higher rate.She's not the only one with sickle cell in her family either. Her younger sister Joanne was also born with it, and two of her other siblings have the trait, which means they don't have the disease but can pass it along to their children.She was always a lot smaller and skinnier than the other kids at school, which meant that others often treated her like she was more fragile.

Amy Mason had toughed it out for hours one day this past July, trying warm soaks and heating pads and deep breathing to soothe pain that felt like her bones were being sawed with a rusty blade. She knew this was a life-threatening emergency of sickle cell disease, in which her misshapen red blood cells were getting stuck in her blood vessels like tree limbs in a storm sewer. But she delayed going to the emergency room; previous visits hadn’t gone well.Just before midnight, Mason, 34, finally had her boyfriend drive her to a Mobile, Ala., hospital. She told the triage nurse that she was having one of the worst sickle cell crises of her life and that she was off the far end of the 1-to-10 pain scale. She was told to wait.

Dr. Jeffrey Taubenberger of the National Institutes of Health looked into a microscope this summer and saw something unexpected. He had been looking for evidence of a flu virus. Instead, he found the earliest known proof of sickle-cell anemia. Host Liane Hansen interviews Maryn McKenna of Wired magazine about the chance discovery of the first tissue sample of sickle-cell anemia.

“When I was 10, I was flogged by a teacher because I didn’t do an assignment. I fainted… That episode became the beginning of the worst years of my life”. More Sickle cell Warriors like Timi Edwin are telling their stories and, reshaping the sickle cell narratives. Read this sickle cell survival story from Timi Edwin, Founder of Crimson bow.How Did You Discover You Had Sickle Cell? My parents discovered that I had sickle cell when I was 1 year old, but I didn’t really know what it meant and how it impacted my life till I was 10 years old. This does not mean that I didn’t have pain episodes and illnesses before that age, I did, I only felt and realized the full impact (pain, stigma, depression) from that age.

It has been quite a year for Ayòbámi Adébáyò. She is in London for International Women’s Day, as she was last year, when it was announced that her first novel had been longlisted for the Baileys prize. Stay With Me went on to make the shortlist and is now up for the Wellcome prize, the winner of which will be announced later this month. The novel was glowingly reviewed, not least by the New York Times’s high priestess Michiko Kakutani (“stunning”, “powerfully magnetic and heartbreaking”); Sarah Jessica Parker chose it for the American Library’s book club; and the author, who has just turned 30, has been interviewed in both the Paris Review and Vogue.When we meet, she has come from the BBC, where she had been discussing the #MeToo movement in Nigeria. “It’s complex and very different across regions, across class, maybe even across religions,” Adébáyò says, describing what it means to be a young woman in her home country.

In this installment, The Hematologist Editor-in-Chief Dr. Laura Michaelis has a conversation with Dr. Ifeyinwa (Ify) Osunkwo of The Levine Cancer Institute/Atrium Health. They discuss unique issues facing the sickle cell disease population during the COVID-19 public health crisis as well as some benefits of using telemedicine and telementoring.  

Whether we like it or not, sex is important in a relationship. If you are not sexually attracted to the person you are in a relationship with then there is a problem. So we decided to dig into the sexual life of sickle Cell warriors.I had Greg Emuze and Adedayo over on Crux of the Matter last Friday on Happenings Radio and I must thank them for being very open. The show was very enlightening.“Sex is not risky. It is fun.” Says Adedayo while Greg says “Sex is a form of exercise and you must be hydrated.”They were open enough to let us know when they had their first sexual experience, how their sex life is and what they do to prepare themselves and avoid having a crisis during sex or immediately after sex.

Acute and unpredictable pain, severe enough to require large doses of narcotics, is a well-documented feature of sickle cell disease. But Tanabe has found that patients in sickle cell crisis often aren't treated properly by doctors and nurses. They erroneously think the patients may be running scams, seeking drugs.Patients suffering recurrent episodes know what works for their pain, but some doctors and nurses take that knowledge a sign of addiction. Patients with sickle cell pain wait an average of 30 minutes longer for pain medication than people with other extremely painful conditions, such as kidney stones, Tanabe's research shows.

I am so proud to start this monthly feature here on GOSH!About. To bring much needed awareness to a cause thats so dear to my heart, called A SICKLE CELL WARRIOR’S STORY.This Feature will be about sharing the stories of many survivors living with Sickle Cell Anemia today. We will get a behind the scenes view of their daily lifestyle and see how they balance it living with Sickle Cell Anemia.

 In this interview, Dr. Bernard Lopez from Thomas Jefferson University Hospital will be walking through an updated approach to emergency medical care for patients with sickle cell disease, with a representative case review.Sickle cell disease is probably not a very common condition that your typical emergency physician will encounter.  It is not very common so for that reason emergency physicians are likely to not be very familiar with them, so there is that stigma of a sickle cell patient being that rare disease kind of person.  Additionally, for those that are familiar with sickle cell patients, there is really the drug-seeking stigma, that perhaps that patient really does not have pain, or their pain is not that severe but there is that perception that they are presenting simply because they are seeking analgesics, which is typically going to be an opioid.

Tiffany McCoy has struggled with the effects of sickle cell disease. But today, thanks to advances in treatment, she lives a full and active life. Recently, she talked about sickle cell disease in a video created by the National Heart, Lung, and Blood Institute. On living with sickle cell disease: I've lived with sickle cell my whole life. I've never known anything else. I have the most severe form of sickle cell disease. The doctors told my parents that I probably wouldn't live to see my 18th birthday. Sickle cell was like a death sentence. But now, it's totally the opposite. I mean, people can live effective, prosperous, healthy lives. We've come a long way. Since I was a child, my parents have always told me,"You can be whatever you want to be. You can do whatever you want to do." But after I had my daughter, I was really, really sick. I had a lot of hospital admissions–more than normal, more than I've ever had.

Keith Wailoo, Professor of history and public affairs at Princeton University’s Woodrow Wilson School of Public and International Affairs is interviewed by Stephen Morrissey, Managing Editor at New England Journal of Medicine on Sickle cell disease.Professer Wailoo has written a perspective article about the advances in understanding and treating sickle cell disease and about the challenges that remain.The history of sickle cell disease has been marked by controversies over therapy prevention and funding. Despite recent developments in treating pain crisis and gene therapy, many patients still struggle to have their symptoms recognized and adequately addressed.Professor Wailoo says, “For most of the 20th century, sickle cell disease was an invisible disease. Precisely, because it was so hard to clinically recognize, clinical recognition being crucial to actually addressing it. After all, here is a disease that caused early infant mortality in a time period when infant mortality and infectious disease mortality prevailed.”

 Over the past few years, many advances have been made in the fight against sickle cell disease, a group of inherited red blood cell disorders. Many of these advancements are thanks to the work being done by advocacy groups, such as the Sickle Cell Disease Association of America (SCDAA).In a recent interview, Rare Disease Report ® sat down with the president and chief executive officer of the organization, Beverley Francis-Gibson, who highlighted the research presented at the 7th Annual Sickle Cell Disease Therapeutics Conference, which was held this year in New York. Francis-Gibson also discussed remaining challenges associated with the disease and the need for more efforts to promote awareness.

Today’s guest is Safaa Peregrino - Brimah , a Nigerian-Ghanaian woman who lives with Sickle Cell. What I particularly enjoyed about this episode outside of the education piece is this young’s woman drive to live a life with intention. We talked about everything from the social stigma of being a “sickler”, accesses, emotional stress this illness brings on family and of course Sex. My biggest take away from my conversation with Safaa is that YOU determine the fullness of the life you live and not the card you have been dealt. If only we could all be this courageous.

Marie Ojiambo first came into the limelight when she was crowned Miss Kenya USA 2013 and the People’s Princess Miss Africa USA 2013. She entered the pageant because she saw this as an opportunity to bridge the gap in knowledge and understanding of sickle cell disease. She has gone ahead to do exactly that.Q: Tell us more about your background, Marie.A: I am 27 years old and the second born in a family of four children. I am the daughter of a single mother. I was born and raised in Nairobi- went to Loreto Convent Valley road, from where I moved onto pursue ‘A’ levels at the Millenium academy and later on got my Bachelors degree at the University of Nairobi’s School of Pharmacy.

There’s new hope for the 70,000 to 80,000 Americans who are currently living with sickle cell disease (SCD). Thanks to new guidelines for therapy, SCD patients have better pain control during acute pain crisis and reduced hospital stays. The guidelines were presented by Jennifer Yu, MD, a pediatric hematologist/oncologist at Rady Children's Hospital-San Diego and an assistant clinical professor of pediatrics at UC San Diego School of Medicine during the 2017 American College of Physicians (ACP) Internal Medicine Annual Meeting held in San Diego.Dr. Yu said these recommendations are based mainly on the National Institutes of Health’s Evidence-Based Management of Sickle Cell Disease, Expert Panel Report 2014.

The science behind sickle cell disease (SCD) is cruel. For approximately 100,000 American children and adults (and 10-15 million people around the globe), a mutation in a single gene means a lifetime of unpredictable and excruciating pain—along with exhaustion, serious infections, and collateral damage to the brain, heart, lungs, and other organs. Anemia, strokes, pregnancy problems, kidney disease, and joint pain are common.But the racial inequities that have hindered treatment advances for SCD—the most common inherited blood disorder in the United States—are far crueler. “I was at a conference recently where an older woman stood up and said she’d been in situations where she was effectively told, ‘Sickle cell disease is an African-American problem. It’s up to you guys to solve it,’ ” says physician Ted W. Love ’81, M.D., CEO of Global Blood Therapeutics (GBT) in South San Francisco. “But there’s no reason the greater society as a whole shouldn’t be solving this. And thankfully we’re starting to see it get the attention it deserves these days across the biotech industry and with drug regulators.”

Q: When were you diagnosed with sickle cell disease? A: Sickle Cell Disease is a genetic blood disorder, so I, like many patients, was diagnosed via amniocentesis (a prenatal medical test that can diagnose certain genetic conditions) during my mother’s pregnancy. Both of my parents were unaware of their sickle cell trait status until they were pregnant with me. This fuels my passion for helping people become cognizant of their sickle cell trait status so that, when family planning begins, they are fully informed of health risks. Q: Where did you grow up and how did your family help you to manage your condition? A: I am originally from Kalamazoo, Michigan, but I was raised in Union City, Georgia, and Fayetteville, North Carolina. My family is great when it comes to helping manage my disease. My mother cared for me exceptionally well, and she also let me know that I can do anything anyone else can. I never had the notion growing up that I couldn’t do something because of my condition; I just knew that my disease may slow me down from accomplishing it in the time others would. My mother allowed me to do what most other kids did, and I would often forget that I even had sickle cell until I got sick.

Roland Martin talks with Dr. Yvonne Carroll, Director of Patient Services, St. Jude Children’s Hospital, about sickle cell disease. June 19 is World Sickle Cell Awareness day.

The Sickle Cell Podcast is an effort by the Sickle Cell 101, a nonprofit organization. In this Podcast, we are featuring sickle cell clinical psychologist, Marsha Treadwell. We are talking about mental health, COVID-19 and tips and tricks to stay level headed and positive during these challenging times. To listen to the audio podcast, mouse over the title and click Play.

The Sickle Cell Podcast is an effort by the Sickle Cell 101, a nonprofit organization. It talks about sickle cell, sharing warrior experiences and providing sickle cell related education. To listen to the audio podcast, mouse over the title and click Play.Talking about all things sickle cell related, sharing warrior experiences and providing sickle cell related education.

The Sickle Cell Podcast is an effort by the Sickle Cell 101, a nonprofit organization. It talks about sickle cell, sharing warrior experiences and providing sickle cell related education. To listen to the audio podcast, mouse over the title and click Play.Talking about all things sickle cell related, sharing warrior experiences and providing sickle cell related education.

Stuck on sickle cell disease? We hammer out the basics of diagnosis, common sickle cell variants and their manifestations, preventive medicine, acute and chronic pain management, opioid use, and how to recognize and treat common complications like anemia, fever and acute chest syndrome. There is no clinical/laboratory standard for confirming an acute sickle crisis. There are several variants of Sickle Cell Disease (SCD) with treatment differences. Electrophoresis can confirm the diagnosis. Hydroxyurea can decrease crisis frequency, acute chest syndrome (ACS) events, need for transfusions, hospitalizations, and death. Indications for chronic red blood cell transfusion include: failed hydroxyurea therapy, severe disease with genoptyes other than HbSS, or secondary stroke prevention.

 The Sickle Cell Podcast is an effort by the Sickle Cell 101, a nonprofit organization. It talks about sickle cell, sharing warrior experiences and providing sickle cell related education. To listen to the audio podcast, mouse over the title and click Play. Open iTunes to download and subscribe to podcasts.Sickle Cell 101 is a 501(c)(3) nonprofit organization that specializes in sickle cell education on social media and other platforms. Their mission is: We are a non-profit organization educating all people affected by sickle cell through the use of social media.

Singer Tionne "T-Boz" Watkins is opening up about her battle with an incurable disease and how it affected her singing career as a member of the pop group TLC.Watkins' new memoir, "A Sick Life: TLC 'n Me: Stories from On and Off the Stage," describes how she has been able to overcome the difficulties of living with sickle cell disease."The title means so much for me," Watkins told Robin Roberts in an exclusive interview on "GMA." "It's a strong word, 'a sick life,' 'cause I've had it all. I was told I would never live past 30; I would be disabled my whole life and never have kids.""But, no. Like I've traveled the world in TLC. I've worked with Michael Jackson," the singer continued.

Beverley Francis-Gibson is a President and CEO of the Sickle Cell Disease Association of America (SCDAA). Francis-Gibson knows about the pain of sickle cell disease- not as a patient, but as a family member who lost a loved one to the illness. She also knows about the harm done by the silence, rooted in ignorance and sometimes even shame, that is associated with the condition. Born in St. Thomas, U.S. Virgin Islands, in a tightknit family, she witnessed the misery endured by her cousin Vincent, who was born with sickle cell disease and was often so sick he couldn’t play with the other children. “It was very hot, so he remained indoors most of the time,” said Francis-Gibson. “He was hospitalized a lot, had jaundiced-looking eyes and seemed sickly to me all the time.” She was in high school when Vincent passed away. Because of her own family’s ordeal, Francis-Gibson became an advocate and, since March, the President and CEO of the Sickle Cell Disease Association of America.

Carolyn Rowley is a psychologist, patient advocate, founder and executive director of Cayenne Wellness Center and Children’s Foundation. From a young age, Rowley always had a strong faith and dreamed of one day working as a missionary to improve people’s lives. In a sense, she has fulfilled that dream by embarking on what she considers a divine mission as an advocate for those living with sickle cell disease in California. As founder and executive director of Cayenne Wellness Center and Children’s Foundation, Rowley has spent nearly 20 years working to reduce the barriers and discrimination faced by individuals with sickle cell disease while increasing awareness among patients, providers, and the public. But she’s not just an advocate; Rowley also is a patient. She experiences the very struggles of those who live daily with the painful disease and yet is determined to create a brighter, more equitable future.

Courtney Fitzhugh first became interested in sickle cell disease when she was in college, an interest she continued to pursue throughout medical school. During medical school, she participated in the NIH Clinical Research Training Program, where she studied with Dr. John Tisdale, one of the top researchers in bone marrow transplantation for sickle cell disease. Years later, she returned to NIH as a full-time researcher. Today, Fitzhugh’s research focuses on half-matched donors, people whose donor stem cells match only about half of the HLA antigens (proteins on the stem cells) of the recipient. The procedure has the potential to greatly expand the pool of sickle cell patients who might benefit from bone marrow transplants. Her work, combined with recent improvements in immunosuppressant medications, allowed half-matched transplant procedures to become more effective.

For many years, John Tisdale has been working on strategies to cure sickle cell disease by replacing the bone marrow cells that give rise to sickled red blood cells with bone marrow cells from a donor who does not have the disease. That transplantation strategy has shown remarkable results in children with the disease. Tisdale developed a modified transplant technique that is chemotherapy free to make it safer and more effective for adults and the technique is beginning to show great promise in patients undergoing this modified procedure. In August 2017, his research on bone marrow transplantation was featured in “First in Human,” a three-part television documentary produced by the Discovery Channel. It includes a compelling segment about a patient with sickle cell disease who underwent a bone marrow transplant procedure. Tisdale is currently leading a multi-center nationwide study to test the effects of an experimental gene therapy protocol for sickle cell disease.

Linda Thomas is a health care educator, patient advocate, minister, president and co-founder of the Sickle Cell Association of Texas Marc Thomas Foundation. In 1997, Linda and her husband, Pastor Marc Thomas, began the Sickle Cell Association of Texas. Pastor Marc suffered from sickle cell disease and passed away in 2005 at the young age of 46. As President and CEO of the organization that would later bear her husband’s name, Linda is not only keeping her husband’s legacy alive but providing vital services to the sickle cell community in Texas, including health education to patients and health care professions as well as advocacy on behalf of patients. Linda was instrumental in getting legislation passed for newborn sickle trait testing in the state of Texas. She currently oversees three office locations in Houston, San Antonio, and Austin.

It wasn’t until her second year in medical school at the University of Pennsylvania that Marjorie DeJoie-Brewer found out that she had SCD. She had never had to manage pain quite like that, and “it was a steep learning curve,” she says. But learn, she did, quickly discovering that treatment options were scarce. So when she finished her training, she had an idea: Why not use her expertise in internal and rehabilitation and sports medicine to help SCD patients learn how to take better care of themselves? Now, in addition to all manner of volunteer efforts, DeJoie-Brewer wears three hats in service to the SCD cause: medical director for her local SCD association, research clinician at Children’s Hospital, and owner of her own private wellness practice.

Wanda Whitten-Shurney is a pediatrician, advocate, CEO and medical director for the Sickle Cell Disease Association of America (Michigan chapter). Dr. Whitten-Shurney has a long and accomplished history of helping children and their families manage sickle cell disease. A pediatrician by training, Dr. Whitten-Shurney has provided care for children living with sickle cell disease at Children’s Hospital of Michigan for the past 30 years. She is director of the coordinating center for Newborn Hemoglobinopathy Screening Program for the Michigan Department of Health and Human Services. Wanda was the driving force in the establishment of the Sickle Cell Donor Program for the American Red Cross of Southeastern Michigan. Currently, she is CEO and medical director of the Michigan chapter of the Sickle Cell Disease Association of America (SCDAA). Her father, the late Dr. Charles Whitten, was one of the co-founders of the national SCDAA and a pioneer in sickle cell education and outreach.

In 1979, while she was volunteering at a camp for SCD patients, Pat Corley — then a nurse manager at the Los Angeles + University of Southern California Medical Center — caught the attention of a noted hematologist, who was so impressed that he tapped her to become nurse coordinator for an NIH SCD center. Some 38 years later, Corley is still in the game, doing the work she says she loves most — educating health professionals, medical school students, and the public about grave misconceptions about the disease, all while empowering patients to live their healthiest lives. It’s work she’s received so many honors for that Corley could have rested after retiring two years ago. But she hasn’t let up. She volunteers at her former job and for other SCD advocacy groups, spreading the gospel of SCD awareness almost daily.

Swee Lay Thein was educated in both Malaysia and the United Kingdom. She has long been interested in studying blood disorders, particularly the clinical and molecular aspects of sickle cell disease and beta-thalassemia. She served as clinical director of the Red Cell Centre in King’s College Hospital, where she treated a large cohort of adult patients with sickle cell disease. As a laboratory researcher, she developed a strong interest in fetal hemoglobin, the main hemoglobin in fetuses that is responsible for transporting oxygen during fetal life and in infants until they are about 6 months old. Fetal hemoglobin protects against complications of sickle cell disease by blocking the effects of sickled hemoglobin. Dr. Thein’s research explores the underlying genetic mechanisms affecting the formation of fetal hemoglobin, which could lead to new ways to reduce the severity of sickle cell disease complications, including pain.

It was not until their daughter was born five years ago with SCD that Tanielle Randall and her husband found out he was a carrier of the disease. Two years later, she would discover that her second child had the disease. But Randall quickly decided she had to “emotionally move past the fact that my children have this illness and start being proactive and the best parent I could be.” So she dug in, learning everything she could, and eventually joined the board of the Kids Conquering Sickle Cell Disease Foundation. Now, in addition to holding down a full-time job while caring for her daughters, Randall offers resources and advice to other families who are on a similar journey.

In the U.S., an estimated 100,000 Americans live with sickle cell disease, or SCD. Yet, despite its impact, the disease and its patients remain largely out of the public eye.This hour, C-HIT reporter Peggy McCarthy helps us understand why. We discuss the realities of SCD awareness and hear from a New Haven resident living with the disease.

Today, about 100,000 Americans live with sickle cell disease. But there was a moment in the early 1970s when it seemed it was going to be wiped out.The inherited blood disorder mostly affects people of African descent, as well as Mediterranean and South Indian peoples.American civil rights organizations had been calling for greater attention to sickle cell anemia throughout the ’60s. President Richard Nixon singled it out in an address to Congress in 1971, and research funding was increased fivefold.Yet the result was what Boston pediatrician and sickle cell specialist Patricia Kavanagh called “the poster child of what not to do” when it comes to public health.

About 100,000 Americans have sickle cell disease (formerly known as sickle cell anemia). Most of them are black. And many of them have faced challenges from the health care industry in getting their condition addressed. Sickle cell disease can cause chronic pain, multi-organ failure and even lead to strokes. Kaiser Health News reports that patients and their families say the search for treatments is “slow, underfunded, ineffective or too limited in scope.” In summer of 2017, the FDA approved a new sickle cell drug — the first in two decades — making it just the second option on the market for patients. It recently hit pharmacy shelves, but insurers have backed away from covering it, leaving the average monthly cost of $3300 up to patients to pay.

Short video interview with Maya Priest on her experience living with SCD.

All Thingz Nice was founded by director Edith Victoria in 2010: “I got the idea at the end of 2009 from just simply wanting a t-shirt bearing my name made out of sparkly stones. That’s all it was. I am a person, who likes sparkle, luxury and customised things. I like having things that not many have or can get hold of and I am also very proud of who I am and where I am from, so I wanted clothing that reflected this. Then I thought…other people might want that too! Having always been an act now think later type of person, I started making t-shirts as soon as I received my first samples not really knowing who would buy them but confident that somebody would! I also didn’t know where I would sell them… The responses to the first two sets of samples I had made was positive enough to encourage me to continue. I was confident in my products from the very beginning and that gives confidence to my customers. I believe in my products. I love wearing t-shirts with my designs! They are fab! I wear what I sell so my standard of quality is very high. If I wouldn’t wear it, I wouldn’t sell it. Whenever I see someone wearing something from All Thingz Nice, I still can’t believe that people like and buy garments made by me!”

Buy a shirt to support Sickle Cell Awareness. All funds raised will go directly to BOLD LIPS FOR SICKLE CELL. #boldlipsforsicklecell is committed to educate and raise awareness for sickle cell disease through its advocates wearing bold lipstick colors. By doing this, they are making a loud and boisterous statement which in turn gains attention along with conversations being sparked. $20 Gildan Ultra Cotton Ladies T-shirtLadies – BlackSizes XS – XXXL

TOVA aims to provide holistic comprehensive compassionate care and services for persons living with chronic medical conditions in order to improve their overall quality of life and well being. June 19, 2020 is World Sickle Cell Day. World Sickle Cell Day was established by the United Nations General Assembly in order to increase awareness around the world about Sickle Cell Anemia. 20% of T-Shirt sales from our store goes back to the Sickle Cell Disease Association of America (SCDAA) Chapters.     

A Symbol of Self Awareness, Modesty, Respect of Tradition, Culture and Royalty. There’s no Crown of gold, diamonds or otherwise of greater value than a Woman coming into the realisation of her Royalty. As African Women we have been raised in a Culture where our grandmothers encouraged us to crown ourselves. Our headwraps honour our ancestral lineage and adorn us with our roots.I started covering my crown mid 2013. By crowning myself I felt and gained a deeper understanding of my womanhood, modesty, virtue and royalty. Growing up with Sickle Cell, I had low self confidence & esteem; Having Sickle Cell did not make me feel in any way beautiful. It wasn’t until I started wearing my wrap that I felt closer, more loving and appreciative of the woman I am, the culture I represented and the wholeness of my being, even with Sickle Cell.

Santonio Holmes III & Long Foundation, Inc. (“III&Long”) is a Florida nonprofit corporation operating through a fiscal sponsorship with Players Philanthropy Fund (Federal Tax ID: 27-6601178), a Maryland charitable trust with federal tax-exempt status as a public charity under Section 501(c)(3) of the Internal Revenue Code. Every purchase supports the III & Long Foundation, helping lessen the burden of treatment costs for families, and creating special programs for children affected by Sickle Cell Disease.

Sickle Cell Awareness 365 is a brand the promotes advocacy and community activism. Our products engage conversation, which create an opportunity to educate someone about Sickle Cell disease.

“This art is not about violence or hate it is about my life as an artist living with sickle cell disease. It is very hard to convey how much sickle cell pain hurts without images like these. As an artist I have made it my mission in life to put sickle cell awareness in everything that I do so even when I want to create shirt designs I cannot forget to tell people about this pain. Sickle cell can cause extreme pain crisis and other serious live shattering issues, such as infections, stroke, acute chest syndrome and can lead to a life long disabilities. As an artist I have lost the vision in my right eye due to sickle cell and I want to encourage other with my art hoping to inspire empathy and compassion. Donate blood at your local Red Cross or register as a bone marrow donor.” Hertz Nazaire - a painter and sickle cell warrior.

Buy a shirt to support the HBCU college tour. All funds raised will go directly to BOLD LIPS FOR SICKLE CELL.BoldLipsForSickleCell’s mission is to educate and raise awareness for sickle cell disease through its advocates wearing bold lipstick colors. By doing this, they are making a loud and boisterous statement which in turn gains attention along with conversations being sparked. Boldlipsforsicklecell has become a fresh and relevant movement, intended to put a bold and flattering spotlight on this disease and its community. Read more about it here.

Sickle cell disease is an inherited blood disorder that affects red blood cells. People with sickle cell disease have red blood cells that contain mostly hemoglobin* S, an abnormal type of hemoglobin. Sometimes these red blood cells become sickle-shaped (crescent shaped) and have difficulty passing through small blood vessels.

This bow tie is named after Zion Thomas, who is the South Carolina’s Children’s Miracle Network Champion 2017. Zion experiences ongoing episodes of sickle cell crisis, causing him to be hospitalized for IV pain management and IV fluids. It’s while he is undergoing these treatments that his true colors show through the most. The hospital staff and fellow patients often remark how his optimistic attitude rarely waivers.   After a great 10+ years of making bow ties and neckties we have decided to close our doors and move one to something different.  We apologize for any inconvenience.

Candice’s Sickle Cell Fund, Inc. (CSCF, Inc.) was Incorporated in December of 2000. By establishing Candice’s Sickle Cell Fund, we are dedicated to improving services to those who suffer from sickle cell disease. It is only through your generous support that Candice’s Sickle Cell Fund is able to provide scholarships to individuals, with Sickle Cell Disease, who are pursuing post high school education and training. Your generosity allows them to fulfill their mission and provide students with hope for the future. They rely primarily on individual gifts.

College Scholarships.org is a site created to serve people who are interested in college funding. What makes us unique is that we list a broad array of funding opportunities without asking for information from you. There are no long forms to fill out in order to access our resources. We provide different scholarships to people who are pursuing education and are afflicted with sickle cell disease or some other blood diseases. Kermit B. Nash Academic ScholarshipOne scholarship worth $5,000.00 is awarded annually, which is renewable for up to four years of study. US citizens (permanent residents only) diagnosed with sickle cell disease and enrolled in four-year college programs are eligible to apply.To determine winners, the Scholarship Committee takes into account each applicant’s GPA (3.0 or higher required), SAT scores, and level of community involvement. How sickle cell has impacted his/her life, is another consideration undertaken by the committee to evaluate each candidate.

Sickle Cell Partners of the Carolinas (SCPOC) has an awesome accessory for you as masks now have become the new normal for now. You are wearing one right??? Protect yourself and your loved ones please as we continue to fight the coronavirus known as COVID-19. Since it is not wise to meet in person, we will mail the masks to everyone who wants to purchase one. We thank you in advance for helping us pay the costs for postage and packaging to mail them out. Remember, we are a non-profit and we value every dollar donated to our non-profit. The masks are red in color, made of cotton, and have the Sickle Cell Partners of the Carolinas (SCPOC) logo with the elastic ear clips. According to our model, they are soft and comfortable. The cost is $1 per mask.

To be able to promote sickle cell awareness across the globe, My Friend Jen needs your assistance.My Friend Jen is the series of children's books written by Jenica Leah with the aim to promote sickle cell awareness and to give young children with sickle cell the peace of mind she didn't have growing up with the condition. It is also a great tool for creating a better understanding of the blood disorder. The first book in the series, entitled: 'A Little Different' explains the basics of sickle cell and how to stay well with the condition in such a fun and informative way that even adults can learn from it too. The message within this book is to help children with sickle cell to realise that there is nothing they cannot do, as long as they manage their condition properly.

The Sickle Cell Disease Association of America has launched a COVID-19 Emergency Fund Campaign to rapidly raise funds and deploy critical resources to nonprofits that serve sickle cell patients and their families through sicklecelldisease.org with the goal of raising $100,000 in the next 10 days. We’re facing an unparalleled challenge and it requires all of us working together to support those most impacted in our communities” said Beverley Francis-Gibson, President of the Sickle Cell Disease Association of America.

  Registration Time: 6:30am 7:30am. Race begins at 8am. Cost: $25/person before 9/21/2018. $35 on day of race 9/22/2018. Prizes in each category! T-shirts guaranteed to first 300 registrants. Post Run/Walk refreshments Proceeds from this event will support Hina Patel Foundation for Sickle Cell Disease for its programs to fund research & education, assist our local patients and families, allows children ages 8-14 to attend Sickle Cell camp and helps support Comprehensive Sickle Cell Centers in India by providing free health services to people suffering from Sickle Cell disease. For more details please go to www.hinapatelfoundation.org   This event has ended!

Join us on Saturday, September 28, 2019 Place: Belmont Avenue & Avenue of the Republic (In front of The Please Touch Museum) On Site Registration Starts: 7:00 AM Opening Ceremony: 7:30 AM Run Begins: 8:30 AM and Walk Begins 8:35 AM Awards Ceremony: 10:00 AM We look forward to seeing you there!!!   This year’s event has ended. Stay tuned for more information about next year’s event.

24th Annual Walk for Sickle Cell Saturday, September 16, 2017 at 12 am Benefiting SICKLE CELL ASSOCIATION INCNorfolk State University Dick Price Stadium 700 Park Avenue Norfolk, VA

The Sickle Cell Road Race/Walk is an RRCA-certified State Championship race — a major attraction for runners! The race is foremost a charitable event, with proceeds supporting the nonprofit mission and programs of the Sickle Cell Foundation of Georgia, Inc. (SCFG). SCFG serves people affected by sickle cell disease and sickle cell trait — both are genetic blood disorders. Registration for the 40th Annual Sickle Cell Road Race is open for 7k Run/4k Walk. Step off begins and ends at Tri-Cities High School, 2575 Harris Street, East Point, Georgia. Free t-shirt will be provided to all participants. When: Saturday, April 13, 2019 at 8 AM – 1 PM EDT This event has ended.

The Sickle Cell Road Race/Walk is an RRCA-certified State Championship race — a major attraction for runners! The race is foremost a charitable event, with proceeds supporting the nonprofit mission and programs of the Sickle Cell Foundation of Georgia, Inc. SCFG serves people affected by sickle cell disease and sickle cell trait — both are genetic blood disorders. Participants will run the challenging 7k (4.3 miles) course or walk the comfortable 4k (2.5 miles) course down Main Street and through East Point‘s diverse communities. While in town, everyone will get a glimpse of the New City Hall and downtown growth, convenient transit, neighborhood charm, hospitality, and robust businesses like yours, which the City of East Point offers. The 7k run is chip timed, the course is certified, and it’s a Peachtree Road Race qualifier. Rain or Shine our event will go on! Due to the COVID-19 virus, we have postponed the Sickle Cell Road Race/Walk until September 12, 2020. We are still accepting applications. If there are any additional changes it will be communicated here on our website. 

Sickle Cell Disease Association of Illinois is organizing 44th Annual Walk/Jog/Bike-A-Thon to raise sickle cell awareness. 100% of the proceeds from this event will go directly to fund programs that provide direct supportive services to individuals with sickle cell, as well as awareness and advocacy to the community.When: Saturday, June 9, 2018 at 08:00–13:00 CDTWhere: Chicago Lakefront at 39th Street and Lake Michigan, Chicago, ILOnline Registration

The 2017, 6th annual 3K Walk for Sickle Cell, happening July 1st, at Rosewood Park-Doris Miller Auditorium, will feature both an indoor and outdoor exposition. Providing our community sickle cell trait testing, live music from The Blues Specialist featuring Mel Davis, participation from community leaders such as Precinct 1 Commissioner, Jeff Travillion, and Sheriff Sally Hernandez, breakfast items, vendor communication, a in memoriam presentation, and tons of family-friendly activities! Proceeds from the walk help children in Texas suffering from sickle cell disease attend Camp Cell-A-Bration, a wonderful environment for them to have fun, socialize, and meet others with their same condition.

  Tammy Smith's daughter, Precious, often got sick as a baby and she cried—a lot. It wasn’t until Precious became so sick and nearly died that Tammy took her to a different hospital for treatment and learned that Precious had sickle cell disease (SCD). The inherited blood cell disorder causes red blood cells to morph into a crescent (“sickle”) shape and get stuck in small blood vessels. This blockage inhibits blood flow, which deprives tissues of oxygen and causes severe pain and tissue damage. Precious received her first blood transfusion at the age of two. It was the beginning of many stays in the hospital that would prove isolating and difficult for the young family. Here are the details of 7th Annual Walk for Sickle Cell organized by Precious Organization:   When: Saturday, September 14, 2019   Where: Rock Spring Park, 2116 College Ave. Alton, IL, USA

Cure Sickle Cell Foundation (CSCF) hosts its annual Wine Tasting, Cheese & Wine for Valentines. This signature event will feature the incredibly soulful sounds of the 601 LIVE Band. The tastings include great wines and sample international cheeses that pair well. Jack Patterson II will capture the magical moments beautifully with his camera. Our Valentine's Wine Tasting is not just for couples. A date is not required. Make it a fun girls night out or fellas time. This is an event for those who desire to support CSCF and learn about the world of wine. Each ticket holder will be provided a signature CSCF Wine glass.

  7th Annual 5k Run / Walk: Saturday, August 17, 2019 Pre-registration $30 (T-shirt included) All funds raised will benefit patient care/needs.   Where: 10955 E. Exposition Aurora, Colorado, United States

The doitforcharity.com Super Hero Run is a fantastic running event taking place in London's Regent's Park on Sunday 14th May 2017. Over 3,000 people are expected to take part raising funds for hundreds of different charities and now this is your chance to join them! No previous experience is required for the London event and with a bit of training the distance should easily be within your capabilities. The spirit of the event is 'taking part' not 'winning' so you can run, jog or walk - you decide!

We invite you to support the Mark Walden Memorial Sickle Cell 5K Run/Walk sponsored by the Sickle Cell Foundation of Tennessee (SCFT) on Saturday, September 21, 2019 at the Autozone Park (corner of Union and Third). The Sickle Cell 5K Run Walk in Memphis originated in 2007 by the Alpha Memphis Education Foundation. It was developed to create a greater awareness in the Memphis community of Sickle Cell Disease and to raise money for patient care, social services, and research. Presently, the event is under the leadership of the Sickle Cell Foundation of Tennessee. All proceeds from the event will directly benefit individuals living with Sickle Cell. The ultimate goal is to improve the quality of life for individuals living with this debilitating disease.

There are hundreds of families in Central Indiana living with the burden of Sickle Cell Disease. Many of those families need additional support which Martin Center Sickle Cell Initiative (MCSCI) strives to provide. Your participation in the 23rd Annual Sickle Cell 5K Walk/Run will enable MCSCI to fill those gaps with quality supportive services. The Annual Sickle Cell 5K Walk/Run is our premier fundraising event. Proceeds benefit our programs which aim to aid and enhance the lives of those affected by Sickle Cell. This includes Sickle Cell education, family support, food pantry, monthly support groups, and advocacy.   When: Saturday, June 22nd, 2019 8:00 AM (Eastern)   Where: Riverside Park, Indianapolis, United States

On May 19, 2019, Embrace Kids Foundation is hosting the Heel to Heal Plus Tackle Sickle Cell 5K at Liberty State Park in Jersey City, NJ! Liberty State Park is a beautiful setting that offers incredible views of the Statue of Liberty & Lower Manhattan. The 1-to-5K run/walk is for all ages and will be followed by a celebration including music, food, and fun at the park.

There are hundreds of families in Central Indiana living with the burden of Sickle Cell Disease. Many of those families need additional support which Martin Center Sickle Cell Initiative (MCSCI) strives to provide. Your participation in the 21st Annual Sickle Cell 5K Walk/Run will enable MCSCI to fill those gaps with quality supportive services.The Annual Sickle Cell 5K Walk/Run is our premier fundraising event. Proceeds benefit our programs which aim to aid and enhance the lives of those affected by Sickle Cell. This includes Sickle Cell education, family support, food pantry, monthly support groups, and advocacy.

The Neuse Pamlico Sound Women’s Coalition, Inc. (NPSWC), a 501 (c) 3 organization of professional women, is excited to announce the 5th annual 5K Walk/Run for Sickle Cell on March 14, 2020. “Why Sickle Cell?” Simple. SCD is a devastating blood disease affecting millions worldwide. Greater than 100,000 are here in America. SCD affects more than 5,000 patients and families in North Carolina, with approximately 80 infants being diagnosed in newborn screenings each year. The disease occurs in about 1 of every 365 African-American births and about 1 out of every 16,300 Hispanic-American births. In addition, people with SCD have less access to comprehensive care than people with many other genetic disorders. That is why we plan to use the money in our local communities. Together we will assist with treatment, transportation and the expense of other daily challenges that come with battling Sickle Cell.

Join Piedmont Health Services & Sickle Cell Agency for the 6th Annual Sickle Cell Run/Walk on Saturday, August 31, 2019! Tickets are $25 for individuals, or, you can organize a 10-Person Team for $200 ($20 per person). A complimentary T-shirt is included for each participant. The Run/Walk For Sickle Cell helps us increase awareness and raise much-needed funds for sickle cell services. Your participation will help us improve lives and provide priceless support to those in need. So come on out for a fun, healthful event and a great cause! Where: Corner of S. Mint Street between Romare Bearden Park and BB&T Baseball Stadium Uptown Charlotte, North Carolina, United States

Join us for a fun and exciting motorcycle ride to help raise funds and awareness for sickle cell disease! The ride will consist of a scenic drive through Greensboro and Guilford County and will end at Hagan Stone Park where we will have a cookout! The event starts at the PHSSCA office, 1102 E. Market St., Greensboro, NC. Registration starts at 9am; kickstands up at 11am. Entry fee is $15 per motorcycle with all proceeds to benefit sickle cell services. Free food will be provided for bikers. We will have many cool items to raffle--including a 50/50 raffle, motorcycle helmet and motorcycle jacket! Clubs as well as individuals are encouraged to participate. Join us for an afternoon of fun, food and fellowship--all while benefiting a great cause!   When: Saturday, August 24, 2019

 Lets go Golfing!Naturally, we are talking about more than just golfing, but having fun. Sickle Cell Disease is a genetic blood disorder that makes life miserable for many people around the globe. Yet, it is most prevalent in African Americans, striking one in every 500 newborn babies. The only known cure for Sickle Cell Disease, a bone marrow transplant, is not so readily accessible. It is an extremely expensive procedure, placing it out of reach for most of the Sickle Cell Disease Association of Illinois' clients.Meanwhile, until a universal, affordable cure can be found, the Sickle Cell Disease Association of Illinois will honor its covenant to "Help Ease The Pain of Sickle Cell Disease." Whatever you can do is appreciated.Your participation in this event is a good way to feel good about the part you played in the effort to, "BREAK THE SICKLE CYCLE!"  When:Saturday; September 22, 2018Registration/Check-In - 12:00 PMShotgun Start - 1:00 PM Location:Ruffled Feathers Golf Club1 Pete Dye DriveLemont, IL, USA

Registration for the sickle cell association of hillsborough county's all star clebrity golf classic 2018 is now open. The tournament will happen at Lexington Golf Club, Florida on April 21, 2018. The mission of the Sickle Cell Association of Hillsborough County, Inc. is to help individuals with sickle cell conditions live lives that are, to the maximum extent possible, unhampered and uncompromised by their sickle cell conditions.

Registration for the Sickle Cell Disease Foundation of California's 2018 Golf Classic is now open. We hope you can join us at one of the greatest golf classics in Southern California. Not only is this a great tournament but also a great cause.All proceeds benefit Camp Crescent Moon, the nation's first and oldest week long overnight summer camp for children with sickle cell disease. This year marks the 51st Anniversary for Camp Crescent Moon. Please forward this information to friends, family and co-workers who may have an interest in participating.When: 26 March 2018 at 10:00–19:00 PDT Where: Western Hills Country Club Chino Hills, CA Register at scdfc.org/golf

The Sickle Cell Disease Foundation of California has made a critical difference in the lives of many individuals living with sickle cell disease. The year 2017 will mark 60 years for the Foundation working toward the mission to provide life-enhancing programs and services to individuals with sickle cell disease in California. From our longest running program, Camp Crescent Moon - making sleep-away camp available for children with the disease for the last 50 years - to our newest partnership with MLK Hospital in opening the first Adult Sickle Cell Clinic, we are excited about the next 60 years of care and advocacy we're embarking upon! The event has ended.

The Sickle Cell Society was first set up as a registered charity in 1979. It was formed by a group of patients, parents and health professionals who were all concerned about the lack of understanding and inadequacy of treatment with sickle cell disorder.The Society’s mission is to enable and assist individuals with a sickle cell disorder to realise their full economic and social potential. This is achieved by improving opportunities for sickle cell affected individuals and families by raising public awareness through education, advocacy together with the provision of direct welfare services, assisting in research and lobbying.

The Sickle Cell Association invites you to the 8th Annual SICKLE CELL STROLL on Saturday, September 7, 2019. ADDRESS: O’Fallon Park, 4343 W. Florissant Ave, St. Louis, MO 63115 TIME: Registration/Check-In begins at 9:00 A.M.  Sickle Cell Stroll 2019 is a walk to raise awareness of sickle cell disease and raise funds to continue the mission of the Sickle Cell Association. It is an event designed to celebrate the lives of those with sickle cell disease and to educate the community about the disease. Whether you have sickle cell, know someone who does or would like to show your support, come stroll with us!   The event has ended.

The 21st Annual Sickle Cell Walk is scheduled for Saturday, May 4, 2019, from 8:00 a.m. – 12 noon at Linn Park located at 710 – 20th Street North in Birmingham, AL, USA. Join us for family fun, exercise, and entertainment while we raise funds for a worthy cause. Our goal is to raise as much as possible and elevate sickle cell awareness. Shelia Smoot, J.D., of Summit Media will serve as our Honorary Chair & Celebrity Spokesperson for the event. The donation is $30.00 per adult (age 18 and up) and $20.00 per youth age 18 and under. The event has ended.

Come celebrate the 5th year of the University City Turkey Trot brought to you by Sickle Cell Partners of the Carolinas on Thanksgiving Day! Join fellow runners and walkers Thanksgiving Day for the 5th annual University City Turkey Trot 5K at 3024 Prosperity Church Road (formerly The Fresh Market) in Charlotte for all of University City to enjoy! After the race, cool down and enjoy a post-race mini-feast featuring food, drinks and music! The University City Turkey Trot 5K will also feature a fun run for kids and costumes are encouraged for all those young at heart! Prizes will be awarded for the top three costumes. Participation in this event supports Sickle Cell Partners of the Carolinas.

Walk for Sickle Cell Austin is hosted by the Sickle Cell Association of Texas Marc Thomas Foundation, a 501(c)(3) organization that has operated out of Austin since 1997 and provides services for individuals throughout the state affected by sickle cell disease. The walk supports and champions families with sickle cell disease across Texas. All funds raised from this walk will go to support the agency’s annual Camp Cell-A-Bration, a camp for children between the ages of 6 and 14 with sickle cell disease. The walk will feature our community trait testing, live music, vendor communication, a memoriam presentation, and tons of family-friendly activities. Everyone is invited! When: 8:00 AM On-site Registration Walk Begins promptly at 9:00 AM,  On June 13, 2020. Where: Doris Miller Auditorium, 2300 Rosewood Ave., Austin, Texas, United States Price: Individual Walker- $25 (On-site registration $30), Children ages (6-15)- $15 (will receive a shirt), Children under 5 FREE (will not receive a shirt), Children with sickle cell disease FREE (will receive a shirt based upon availability), Team of 10 adults- $240, Team of 20 adults- $480. Online Registration

Plan ahead to participate in the Fall 2016 Sickle Cell Awareness event and SAVE MONEY! The 5K Walk, Run, or Jog for a Cure annual event will be in Oklahoma City on Saturday, September 17, 2016.

Walk with us! Can you see yourself in their shoes? Each year ever-increasing numbers of women, men and their families are joining the Walk-A-Mile for Sickle Cell even which supports those with Sickle Cell Disease across the state. The event is a playful way for the community to become engaged, educated and energized while learning about the resources and services available to those with Sickle Cell throughout the state of Georgia. Proceeds from this event will help the Foundation with community outreach, education, and testing programs.

The Traditional Music Society will be holding its 7th annual World Music and Dance Showcase this spring. We will have guest artists representing various cultures from around the world, such as Spain, Brazil, Puerto Rico, Cuba, Africa and America. We will have guest appearance by musicians and dancers from the Brazilian Academy Cultural Center, with Ninja Pinto, Ole Flamenco group with Tamara Carson, and Areirto, a Puerto Rican folkloric dance group with Paulette Alejandra. Additionally we will have presentations from the TMS African youth ensemble along with students from the Mary L Kelly Center. This year our event will be a Fundraiser for Sickle Cell Anemia. This is a debilitating disease primarily affects African Americans, who have the trait which can be transmitted to others family members. We are partnering with the Uriel Owens Sickle Cell Disease Association of the Mid West as beneficiaries, in tribute to their efforts to bring about the awareness of this illness and providing badly needed services to those families who are affected by it. Mr. Eric Kirkwood, director of this organization will be our keynote speaker. The event is free to the public.

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