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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.

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.

“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.

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.

June 19 celebrates World Sickle Cell Day. Sickle cell patient Daisha Dillon shares her pregnancy success story and how her UConn Health care teams have been with her every step of the way in her journey to motherhood. “I trust UConn Health with me and also my baby. They take care of me like family." Daisha Dillon, 31, of Manchester is overjoyed to be six months pregnant and expecting her first baby to be born this September. But soon after her own birth she started her daily battle with sickle cell disease and the countless severe pain episodes that come with the inherited condition causing her red blood cells to be abnormally sickle-shaped. “The pain I experience from sickle cell is shocking and feels like someone is stabbing you, abruptly and repeatedly,” says Dillon. “One of the stigma’s for sickle cell patients like me is I was told my whole life I can’t have kids. It will just be too painful.” But together UConn Health and Dillon are striking out this misconception.    

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.

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.

One of the best feelings in the world is cutting a hospital bracelet. Cutting a hospital bracelet can symbolize a fresh start. You’ve been discharged from the hospital. You are feeling like the best version of yourself — happy, relaxed, optimistic, and ready to prove that sickle cell can’t keep you down. However, sometimes I feel like hospital bracelets are cut prematurely. I was admitted to the hospital Sept. 13 because of a vaso-occlusive crisis. I had pain in my arms, my back, and my legs. I was taking oral morphine, dihydrocodeine, and acetaminophen every four hours. 

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.

When Precious Lee was a year old, she began to experience severe pain in one of her arms. Her mother, Tammy, knew something was wrong—Precious had stopped eating and wasn’t moving her arm at all—but the doctors at their local hospital didn’t share her concern. “My mom brought me to the hospital multiple times, but they kept telling her that I had the cold or the flu,” says Precious, who is now in her thirties. “They didn’t know what was wrong with me, so they just kept sending me home.” Realizing her daughter needed urgent help, Tammy drove from their home in Illinois to a children’s hospital in St. Louis, Missouri. Once there, Precious was diagnosed with sickle cell disease (SCD), an inherited blood cell disorder that inhibits blood flow, which deprives tissues of oxygen and can cause excruciating pain, stroke, and organ damage. Now, over three decades later, Precious has spent her lifetime navigating the health system, first as a patient with SCD and then, after her son Melvin was born with SCD, as a mother. She has lived with the impact of SCD, witnessed significant advancements in care, and intimately knows the barriers families still face. Below, she describes those challenges and elaborates on opportunities for continued improvement.

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.

These episodes feature voices from the global sickle cell community, speaking in their own words about issues that affect their lives. It’s the latest look at inspirational individuals who won’t let the disease define their potential. Dr. Kumar, a global health physician and photographer, is sharing images and stories of challenge and inspiration from around the globe to raise awareness for sickle cell disease and help change how the world sees it. You’ll see how people with the condition overcome challenges, what gives them hope, and what keeps them motivated.  

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.

“I'm 32 years old and have lived with sickle cell disease my entire life. Because it's a genetic disease and I was born with it, it really becomes part of your way of life. I've tried to live a normal life as much as possible. I had a stroke at 2 years old and after that, I was receiving at least a unit of blood every month to prevent more from happening. If I was in a crisis, I would sometimes need even more blood and be admitted into the hospital. I've had countless blood transfusions, and without them, I know for a fact I would not be here today. I guess you could say I’ve been a professional sickle cell advocate for the past several years. Sickle cell is what I call the invisible disease. You can tell people, ‘Oh, I'm in so much pain,’ but you can't totally see it.

“You don’t look sick.” That’s something I hear all the time. It's hard to get people to understand that I don’t look like what I’m going through. I have sickle cell disease, a complex genetic blood disorder that affects the shape of red blood cells. People with sickle cell disease inherit an abnormal hemoglobin gene that prevents the proper delivery of oxygen to the body’s organs, which is why the form of the disease I have is also referred to as sickle cell anemia. The disease is characterized by unpredictable, severe, and painful events known as “sickle-cell pain crises.”

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).

My name is Cortney and I was diagnosed with sickle cell disease when I was six months old. I was very sick as a child and in and out of the hospital frequently. During my hospital stays, the nurses would try and cheer me up and make it more fun for me, which is how I fell in love with nursing. I’m currently in nursing school and I won a scholarship with the Black Nurses Association. Sickle cell impacts all aspects of my daily life. I have 12-hour clinicals, and it's hard on my hips to stand up the whole time. I feel drained throughout the day. Beyond the physical, sickle cell also weighs on me mentally. I have to think about what I eat and make sure I’m not exercising too much so I don’t hurt myself.  

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.

New York Jets running back Tevin Coleman didn't know that he carried sickle-cell disease until he was in college. That's when the rigorous training required for his professional football career brought his medical condition to the forefront.  Carriers to sickle-cell disease have what's called sickle-cell trait, which occurs when a person inherits one sickle-cell disease gene and one healthy gene.  In most cases, people with the trait don't notice symptoms, but athletes with the trait like Coleman may have an increased risk for heatstroke and muscle breakdown after intense exercise, according to the CDC. Coleman needed to emphasize hydration and rest to continue his career.  

Tevin and Akilah Coleman are determined to make a difference. The NFL star and his wife both knew growing up that they carried the sickle cell gene but didn't realize how that would impact them as they started their family. Speaking with PEOPLE to discuss the auctioning of his cleats as part of the NFL's My Cause, My Cleats, the veteran running back and his wife shared how their journey into sickle cell advocacy began after their daughter Nazaneen was diagnosed. Tevin and Akilah welcomed their twins, Nazaneen and Nezerah, in 2017, and found out about Nazaneen's unique health needs when she was just an infant. "I knew something was up," Akilah tells PEOPLE. "My son, they knew he didn't have it but pretty instantly, with my daughter, we had to go back and do a couple of different tests because they knew that there was something going on. It was confirmed around four months."

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.

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.  

“When I’m in that moment of pain in the emergency room, I can’t even think for myself. The pain is debilitating and they’re asking me questions like, ‘Are you sure you have sickle cell? We need to look into this,’” says Mimi, a 37-year-old lawyer and mom of four. Mimi’s medical history is similar to that of many individuals with sickle cell disease (SCD): she has experienced severe pain since a young age, frequently sought care in the emergency department (ED), and has received numerous blood transfusions (when healthy blood is given to a patient through one of their blood vessels). But Mimi’s genetic (inherited) blood disorder comes as a surprise to many healthcare providers when they first meet her because of one detail: she’s not African American.  

  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.

Whenever I shared other people’s distinctive journeys with sickle cell, I am astonished at how our stories are so different. I mean in terms of complications. One thing I have noticed with most people who suffer from one disease or another, in the African continent, is that faith plays a major role in their ability to make sense of their sickness. Faith becomes an anchor when one has asked all manner of inexhaustible questions about why one has such a disease. However, issues about pain, management and looking after oneself are the same for anyone living with sickle cell.

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.

“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.  

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.

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.

Marie was born in Kenya to a single mother, Josephine Ojiambo. She eventually had two younger siblings, but she bonded most closely with her older brother Peter. They were just one year apart. “We sheltered each other… and went through life teaching each other.” Their experiences were very similar. They went to the same schools. They had the same friends. And they both were born with sickle cell anemia, caused by a mutation in a single gene that turns red blood cells into rigid crescent or sickle shapes, instead of soft discs. Marie’s mother founded the Peter Ojiambo Foundation, of which Marie and her sisters are board members. Marie had done extensive work in the nonprofit space before this, focusing on advocacy and education for sickle cell disease with the Sickle Strong Initiative. Since beginning her advocacy work, the number of treatment options for sickle cell have significantly increased.

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.

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.

We all know that mental health and mental health issues are not talked about enough and I feel like it is because it is not encouraged in many homes, especially here in Nigeria. Over the years, my mental health has been up and down. Growing up in a family where this type of conversation is not encouraged, I find it difficult to express my feelings or open up to anyone, even when I wanted to. I recently saw a video where a girl shared her story with sickle cell and she mentioned that sickle cell drains your confidence.

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. 

When I was younger and didn’t have a full understanding of sickle cell, my parents made sure I was aware of the things I had to do to ensure I was as healthy as possible. For example, I knew I had to take my medicine every morning, wrap up and keep warm, and drink a lot of water. Drinking 2 liters of water a day as a 6- or 7-year-old in primary school was a serious challenge, but my parents made it easier by doing the following.

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.”

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.

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.

My name is Tristan from the United States and I am living with Sickle cell anemia. My passion in life is fashion, design, and entertainment. I am a professional model, an actor, and a fashion designer who has couture, and ready to wear fashion brand for Sickle Cell Disease Awareness that I created, called DiVo Stars, and Haus Of DiVo. I love to sketch and create new designs for my brand. When I see someone in my clothes and see how it makes them feel good about themselves I get so much joy from that.  

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.

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

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.