Trusted Resources: Community Center

Our core objectives are raising awareness on sickle cell disease as well as educating the public to push for advocacy, thus, giving HOPE.

The American Sickle Cell Anemia Association or ASCAA, is an organization that provides quality and comprehensive services through diagnostic testing, evaluation, counseling, education and support to individuals and families at risk of Sickle Cell Anemia. The ASCAA is a non-profit 501(c)3 located in Cleveland, Ohio. Founded in 1971, the ASCAA is the oldest sickle cell research, education and social services organization in the United States.

An advocacy non-profit organization connecting those with Sickle Cell Disease with researchers creating a cure or developing new treatments.

It was started on 19 August 2014 by Shamonica CEO & JewEL CFO, boosted by members of the Sickle Cell Community, including celebrity artist, Tionne Watkins, aka T-Boz. The mission is to help bring awareness to Sickle Cell Disease and to find a cure.

The Comprehensive Sickle Cell Center at Children's Hospital & Research Center Oakland was started in 1978 to deliver comprehensive care to children and adults with sickle cell disease. The sickle cell center grew quickly and was funded by the National Institutes of Health as one of ten Comprehensive Sickle Cell Centers in the country. The center has been active in research nationally, conducting large multi-center trials in sickle cell disease and internationally, providing our expertise to programs abroad. The care at Children's Hospital is all inclusive, focusing on patients and their families through all of the stages of their lives - from infancy, through adolescence, to a successful adulthood. While pediatric and adult programs have separate staffs, there are also shared staff who bridge the transition to adult care. Center providers are experts in sickle cell disease, transfusion medicine, and bone marrow transplantation. Our center collaborates in national studies to promote better treatment for sickle cell disease and is recognized as an innovator for new therapies.

Children's Sickle Cell Foundation,Inc offers year round family and educational support, and wellness programs. Our Learn2Swim and KarateFit programs are fun ways to keep active. We have monthly family support meetings and activities. Our mission is to provide quality programs for children with sickle cell disease and their families in the areas of education, social and economic support. Our commitment to community awareness and support for research are natural extensions of this mission.

We are dedicated to promoting awareness and research for a cure. Our goal ois to fight sickle cell and help the families suffering with the disease.

The Foundation for Sickle Cell Disease Research (FSCDR) is committed to supporting innovative research in sickle cell disease to help maximize quality of life and improve survival for the generations of people affected with this disease. FSCDR is a comprehensive, non-profit organization that provides a platform for researchers, healthcare providers, individuals and their families living with sickle cell disease and supporters to work collaboratively in identifying barriers that are limiting creation, adoption and adherence to evidence-based screening recommendations, new therapeutics and best practices that help in the management of sickle cell disease. FSCDR also provides networking that facilitate collaborative learning through its membership-based Sickle Cell Research Society of America (SCRSA) and its general Corporate Engagement Forum, which also invites patient participation.

Elevating the voices of the sickle cell community

Sickle Cell & Young Stroke Survivors (SCYSS) is a charity that supports children and young people affected by Sickle Cell Disease and childhood stroke. Sickle Cell Disease is a genetic blood disorder that is associated with pain, silent strokes and other severe complications that affect children’s everyday life and their learning ability.It is worse when the child experiences strokes that affect their cognitive learning ability and mobility. As a charity we want to support children and young people who are living with this in their everyday life.

Sickle Cell 101 is a 501(c)(3) nonprofit organization that specializes in sickle cell education on social media and other platforms. Our slogan is, "education + awareness" because we strongly believe these two factors are vital contributors to the progression of the disorder, with the end goal of a universal cure. Through education we are able to equip those affected by sickle cell, around the world, with a comprehensive understanding of the disorder. Equally, by raising awareness, our goal is for sickle cell to become a household name to encourage genetic testing, generate funding, and further research efforts.

Sickle Cell Aid Foundation is a registered association with a dual mandate to promote the standard of health care for sickle cell persons in Nigeria and to create exceptional awareness on Sickle Cell.

A non-profit organization raising awareness and supporting children, adults and families affected by the many facets of Sickle Cell Disease.

A place where you can go to get support because sometimes it is hard to find. This is also a group where people can be informed and aware about Sickle Cell Anemia 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.

The Sickle Cell Community Consortium (SCCC) was founded in Februrary of 2014 to provide a platform to unify, strengthen and increase the visibility of sickle cell community-based organizations (CBOs) throughout the country. This Consortium is founded on the belief that a "house divided against itself cannot stand" and a commitment to create an outstanding model of community and patient engagement. We have developed a unified entity, modeled after the U.N. where the individual needs of each CBO can be identified and addressed as a unit, while maintaining the autonomy of each individual organization. SCCC is not a CBO, nor does it seek to replace the actions or activities of existing CBOs. Sickle cell disease CBOs exist to address the needs of the sickle cell community. The Consortium exists to address the needs of the CBOs. Our mission is to assist the CBOs in identifying the needs of their patient population, to aggressively seek funding to address those needs, provide infrastructure support and a platform for collaboration and cooperation between individual CBOs, governmental agencies and pharmaceutical and corporate stakeholders.

Sickle Cell Community Health Network is a 501(c)3 non-profit corporation dedicated to serving people and families affected by Sickle Cell Disease. Sickle Cell Community Health Network (SCN) helps individuals and families become actively involved in the health and wellness of themselves and their loved ones who are affected by the disease through community outreach, education, youth and family-oriented programs. SCN is a primary resource for the Sickle Cell community for information and referral, support, and community building activities.

The Sickle Cell Disease Association of America – Mobile Chapter provides essential social services to individuals diagnosed with sickle cell disease. We also seek to educate the public about this often misunderstood disease, providing testing to the community and counseling services to all those diagnosed with sickle cell trait. We try to empower our clients and families through knowledge, comprehensive programs, and services.

SCDAA provides leadership on a national level to create awareness of the negative impact of sickle cell disease on the health, economic, social and educational well-being of the individual and his or her family and to create awareness of the requirements for resolution; and prepare and distribute substantive educational materials, written and visual, about the sickle cell disease problem for all relevant segments of our society. SCDAA organizes and/or participates in national and regional educational conferences. It develops positions and promote favorable resolution of issues and activities that could have an adverse effect on sickle cell programs or the affected population. It also provides ongoing technical assistance to members and other interested groups or organizations. It encourages adequate support for research activities leading to improved treatment and eventual cure.

SCDA Tarrant is committed to providing meaningful support for persons living with sickle-cell conditions and to work effectively with its clients, partners, caregivers and other social service organizations. SCDA's community-based (non-clinical) programs and services include: - Education (advocacy, awareness, prevention and promotion) - Screening and Testing (sickle cell and associated hemoglobin abnormalities) - Client and Family Services (client intervention, case management for genetic counseling, disease education and more).

SCDAA/PDVC's mission is to serve as a vehicle and resource center for the psycho-social, social service and advocacy needs of children, adolescents, adults and families affected by Sickle Cell Disease and Sickle Cell Trait. SCDAA/PDVC seeks to develop, manage and allocate resources in partnership with hospitals, charitable organizations, community based organizations and social service agencies.

The SCDFC provides a variety of program services and activities that assist individuals and their families in coping daily with this chronic illness. In keeping with our mission and purpose, our programs reflect our commitment to serving our community. The mission of the Sickle Cell Disease Foundation of California is "to provide education and life-enhancing programs and services, to individuals with sickle cell disease, to broaden public awareness about sickle cell disease and to support research to ultimately find a cure."

The Sickle Cell Foundation of the Big Bend is a non profit 501(c) 3 that strives to provide comprehensive health education, counseling, testing services while striving to improve the quality of life for our clients and their families. It is with the assistance of our collaborative partners, we have thus far been able to positively impact those persons living with sickle cell disease, while increasing knowledge to those who may not be informed about the disease.

The formation of the Sickle Cell Foundation Nigeria was preceded by the formation of Sickle Cell Clubs around the country and of the Federation of Sickle Cell Clubs of Nigeria in 1991. The Sickle Cell Club is a non-governmental, non-profit making patient/parent support and advocacy organization that is basically unsuited to addressing some other important issues in sickle cell disorder (SCD) control, such as, research, capacity development, policy implementation, monitoring and evaluation in a sustained manner. In order to focus on these important issues, the Sickle Cell Foundation Nigeria was established in November 1994, as a non-governmental and non-profit making organisation dedicated to the proper care and control of sickle cell disorder in Nigeria.

Since 1971, the Sickle Cell Foundation of Georgia, Inc.’s mission has been to monitor Sickle Cell occurrences, to advocate and advance knowledge, to support research that improves treatment or seeks a cure, and to improve the quality of life for those battling sickle cell disease.

The Mission of The Sickle Cell Foundation of Tennessee is to provide comprehensive social services to improve the quality of life of individuals living with Sickle Cell and educational services to the Mid-South community.

Hospital Chatter is an online facebook group for people in the sickle cell community, who are in the hospital, as a patient or a loved one, and want to talk. We are not doctors, so we are not here to offer medical advice, just conversation with people who can relate to what you are going through. If you can't sleep or you need to talk in the middle of the night, we're hoping you can find someone on this group (consisting of people from all over the world) in every time zone.You are NOT ALONE! #SickleCellCommunity is at your service. 

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.

This is a place for moms with children with sickle cell or mothers with sickle cell who are actively trying to conceive. This is a judgement free zone where we can talk and share about the victories and achievements and sometimes pitfalls of our type of motherhood! This is a group for women only - mothers who have Sickle Cell, mothers of children who have Sickle Cell, women with Sickle Cell who are actively trying to conceive. Grandparents and/or legal guardians of children with Sickle Cell are also welcome. (If you do not fit into any of these categories but still feel like this group can help you please contact the admin/creator of the group - Shamir Jubert-Kimbro.

This group was created for members and families to post prayer requests each day. 

Sickle Cell Society Ireland (SCSI) is the Official Umbrella Organisation for all sickle cell support groups. SCSI represents Ireland at international and global fronts, currently holding the PESCA presidency at the EU front. We specialize in Parent Support, Advocacy, Partnerships & Creating Awareness of Sickle Cell through Educational Workshops, Conferences and Seminars, around Irish Counties.

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.

This is a judge free, drama free support group for Sickle Cell Anemia. We are here to give support and a helping hand when you want to vent about the hardships of Sickle Cell Disease or when you just need a laugh from people who understands you the most.CJ Sanders started this group after finding that there are groups out there that were more judging than understanding. He set to make a difference and ensure that there’s a group that’s all about LOVE. If you ever feel alone let someone know here, please. In this group, we ALL come together, even if it’s just needing someone to talk to. We are all going through the same thing here.  Sometimes friends, spouses, family, doctors, bosses, etc just don’t understand. We will. We know exactly what we are going through.  

A place where those living with Sickle Cell Anemia can come together and unite with others who are also go through the same. Here you will find support, love, education on Sickle Cell Anemia, and most of all a family!

Sickle Cell Warriors is a group of people living, dealing and surviving sickle cell. We are not defined or limited by this condition. We are all here to share our experiences and learn from each other.

The mission of the Sickle International Family Coalition is to connect families affected by Sickle Cell Disease and Sickle Cell Trait worldwide; to provide a comprehensive approach, and to ensure quality access to health care, programs and services.

Tackle Sickle Cell is a campaign to promote awareness and fundraising for children with sickle cell disease.

The Thalassaemia and Sickle Cell Society of Australia is a not-for-profit community organisation that serves as a support and advocacy network for people affected by chronic genetic blood conditions like thalassaemia and sickle cell anaemia. TASCS Australia is dedicated to: Serving as a support network for Australians affected by chronic genetic blood disorders known as "haemoglobinopathies", like thalassaemia and sickle cell anaemia, Seeking to educate and raise public awareness of haemoglobinpathies within Australia, and the need to encourage the public to be tested for these conditions, Encouraging healthy members of the public to donate blood to the Australian Red Cross Blood Service, as fellow Australians who are affected by genetic haemoglobinopathies, require regular blood transfusions in order to live and manage their condition.

We are a non-profit Sickle Cell Disease Association of Canada and a National Voice for Sickle Cell Disease. We are dedicated to improving the lives of those living with the disease.

We are working to improve the general quality of life of people living with sickle cell disease; increasing advocacy against stigma while providing awareness.

The Uganda -American Sickle Cell Rescue Fund (UASCRF), is based in United States that strives to increase sickle cell awareness and improve ways of those living with sickle cell in Uganda.

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.

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.

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?

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.

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.

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.

Welcome to CMO Speaks, a blog featuring the voices of SCDAA’s clinical leadership team. This article was written by Dr. Lewis Hsu, SCDAA’s chief medical officer. The Emergency Department is no one’s favorite place, but unfortunately individuals with sickle cell disease may pay it frequent visits for emergency care. Encountering problems in ED care is distressingly common. During the SCDAA Annual National Convention in October 2023, SCDAA participated in a joint session with the Emergency Department Sickle Cell Care Coalition (EDSC3) entitled “Summit on Emergency Department Sickle Cell Care.” The special morning session, Frameworks to Improve the Emergency Department Experience for Sickle Cell Disease, focused on existing guidelines and efforts related to dissemination and education of emergency medicine clinicians. The keynote speaker for this morning session was Dr. Aisha Terry, president of the American College of Emergency Physicians. Videos expressing the views of people living with sickle cell disease and those that care for them give further insight into the current state of care delivered in the emergency department. Other speakers included: Dr. Henry Young: Point-of-Care Tool to guide management of SCD Dr. Paula Tanabe: Statewide standardization of care processes, the North Carolina experience Dr. David Brousseau: Implementation through a research network, the PECARN experience Yvonne Carroll: IASCNAPA sickle cell disease bootcamp for nurses Major Takeaways on ED Care from the Convention Dr. Paula Tanabe made presentations that included implementation tips for Individualized Pain Plans (IPP) to help ED doctors and nurses to see that the IPP can help speed up their workflow. She suggested that providers put the IPP in the health record where a Patient Portal can access it. One individual reportedly showed their IPP to a new ED when traveling out of state, and that ED acted upon the IPP as credible information. SCDAA is partnering with MedicAlert to store IPPs online and provide patients with a bracelet/wallet card with a QR code that links to their information. We hope that the MedicAlert imprint will make the IPP credible. The ACEP Point-of-Care Tool for sickle cell (website and mobile app) built into their algorithm for sickle cell acute management that dosing of pain meds should be guided by IPP as first choice, weight-based dosing as second choice. A new calculator for sickle cell experts to create IPP dosing in the ED based upon the individual’s chronic opioid intake was created by Dr. Paula Tanabe and Dr. Patricia Kavanagh. The tool was validated in a clinical trial COMPARE-VOE. The Excel calculator and instructions are posted for health care providers to use at the National Alliance of Sickle Cell Centers website.

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.

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.

For someone who stresses the importance of health, my diet is poor. Thankfully, I have friends who have noticed the harsh reality of my eating habits and haven’t shied away from informing me. It’s safe to say I have seen the error of my ways. I hate vegetables, but that’s not a good enough reason to avoid them, especially at my age. I like fruits a lot but rarely buy them, as they tend to expire before I get the chance to eat them. It feels like a waste of money. Eating fruits and vegetables has many health benefits. 

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.

Whenever I meet new people and tell them I have sickle cell disease (and explain what it is), they often ask how they can help. June 19 is World Sickle Cell Awareness Day, so I thought it appropriate to discuss ways that you can help the sickle cell community, including friends who may have the disease. Because many of the affects of sickle cell disease are internal, the sad reality is that there isn’t much you can do to prevent patients from experiencing them. However, that doesn’t mean you can’t help at all.

Once Hawaii drops its mask mandate later this week, no state in the United States will require everyone to wear a mask indoors to prevent the spread of COVID-19. Yet in many supermarkets, office buildings, movie theaters, and other indoor locations, some people are still masking up. But if only half, or a few, or nobody else is doing so, does the mask offer the wearer sufficient protection? The question is becoming more urgent because even though rates of COVID-19 in most of the U.S. are currently low, they are rising in Europe—due to the fast-spreading variant Omicron BA.2—which has often presaged a spike here.  

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.  

I recently was admitted to the hospital during a sickle cell crisis and because of suspected COVID-19. My experience was harrowing. I have experienced many things as a sickle cell disease patient. I have had pneumonia more frequently than I can remember, suffered collapsed lungs, had deep vein thrombosis and pulmonary embolisms, spent weeks on end in intensive care, and been intubated a number of times. But this latest admission was the most traumatic of my life.

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.

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.

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?

Living her life with sickle cell anaemia, Jenica Leah has battled with the many complications that come with the disorder; but she has never let this stop her from achieving. From being a full-time model at the age of 14 to organizing and managing catwalks with an international events specialist by the age of 20, Jenica Leah refuses to let her condition hold her back. In order to create and develop her award winning children’s book series ‘My Friend Jen’, Jenica Leah has done in depth research of the sickle cell condition to further her knowledge of what she already knows from living with it. Her vast understanding as well as her patient expertise has placed her second to none when it comes to discussing the topic of sickle cell education and raising awareness.

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.

I previously shared some tips for managing sickle cell. If you found those useful, I have a few more suggestions that also may help. I find that when I am in pain, balms such as Mentholatum Deep Heat help. Balms that contain ingredients such as menthol and methyl salicylate are counterirritants and have pain-relieving properties. Once applied, the change in temperature triggers the dilation of blood vessels and promotes blood flow. Balms can also distract from the feeling of pain.

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).

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.

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.

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.  

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.

“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. Patients with SCD frequently have difficulty getting proper treatment when they arrive in the ED. One study found that they wait 25% longer to see a doctor in the ED than do other patients, even though people with SCD tend to have worse pain.  

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.

“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.

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

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.

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.

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.

There are substantial reductions in income over a lifetime for patients with sickle cell disease owing to early mortality, according to a new study that seeks to provide a better understanding of the condition from both the patient point of view as well as a societal point of view. Despite a reduction in the mortality rate of infants and children with sickle cell disease due to various interventions that allow most patients to survive to adulthood, adults have had a more difficult time due to limited access to care and the lack of treatment options; this leaves much to be desired in terms of major improvements in death rates and quality of life.

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.

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.

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.

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.