‘Every Time It’s A Battle’: In Excruciating Pain, Sickle Cell Patients Are Shunted Aside
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.
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 k...
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A Career Inspired by Disease
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.
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 sin...
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A Sickle Cell Warrior Survival Story— Timi Edwin
“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.
“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 E...
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Adulting is especially difficult for youth with special health care needs
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.
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 ...
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An Almost-Love Story
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.
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 t...
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Baby Dream Comes True for Sickle Cell Patient
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.
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 journ...
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Beverly Ndukwu: A Patient Fighting Back With SCD
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.
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 wit...
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Billy Garrett Jr. Chases Dream in the G League
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.
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 ...
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Brandi Abernethy: Nursing Student, Patient, Single Mom
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.
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. Bu...
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CAMEROON: Let’s Talk about Sickle Cell Disease
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.
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...
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DanceBlue inspired UK alumnus to study and fight health disparities
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.
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 e...
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Darryl Watkins Stays Positive in Spite of Sickle Cell Disease
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.
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...
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Dating With Sickle Cell Can Be a Psychologically Damaging Affair
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.
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...
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Don’t Be Shy About Asking to Remain in the Hospital
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.
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...
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Ep. 30 Jordin Jackson Conversation
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.
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 ca...
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Four Solutions for Sickle Cell Disease Support
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.
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...
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Here to Stay — Living With Sickle Cell Disease
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.
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...
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Honoring Global Warriors With Dr. Alex Kumar’s Untold Stories of SCD
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.
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 l...
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Kyriako Damavoletes Talks About the Stigma of Sickle Cell Disease
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.
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. ...
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Living Well With Sickle Cell: Andre Harris (Video)
My name is Andre Harris. We are in Houston, Texas. Well, my connection with sickle cell disease is first that I am a sickle cell patient and also I am an advocate for sickle cell disease. And so this is very important to me because I am a patient and a male so I identify with all of the areas that we're talking about today. Yes, so black men, already dealing with a lot of stigmas, first being black and secondly being male.
I would say to doctors, nurses, health care providers within the emergency room setting that they need to learn their patients to as individuals and not as a statistic. And many providers treat their patients just to get them out of the door in the emergency room setting. But if they learned who they were and took the time to understand what brought them there that they'll be able to provide them with the best quality care as possible.
My name is 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 ...
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Living With Sickle Cell Disease – André Marcel Harris, MSW
“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.
“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 norm...
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Living With Sickle Cell Disease Is a Constant Battle With Pain, According to one Woman Who Has 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.”
“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 g...
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Living With Sickle Cell Disease: One Person’s Story of Pain and Prejudice and Their Hopes for a Stem Cell Therapy
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.
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 treat...
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Living With Sickle Cell: ‘I Don’t Know What It Means to Be Without Pain’
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.”
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 give...
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Living With Unpredictable Pain: A Sickle Cell Disease Story
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).
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 ...
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My Story With Sickle Cell Disease – Cortney
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.
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 wo...
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My Story: “Any Day Without Pain Is a Good Day!”
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.
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 healt...
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New York Jets Running Back Tevin Coleman: Sickle-Cell Trait Threatened My Career. Now, I’m Raising A Daughter With Sickle-Cell Disease
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.
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 brough...
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NFL’s Tevin Coleman Opens Up About Daughter’s Sickle Cell Journey: ‘We Try to Uplift Her’
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."
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 the...
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Our Healthcare System Abandons Adult Sickle Cell Patients
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.
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 ane...
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People With Sickle Cell Are Seen as Hypochondriacs or Drug Addicts. Even a Nine-Year-Old Has to Scream to Get the Care They Need
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.
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, navi...
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Playing through sickle cell
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.
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 Tyso...
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Real Stories From People Living With Sickle Cell Disease
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.
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 ...
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Real Stories From People Living With Sickle Cell Disease: Mimi
“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.
“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 n...
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Screening for sickle cell and beta thalassaemia
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 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 ar...
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Sending a Child With Sickle Cell Disease off to College
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.
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 d...
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Sickle Cell and I: A Long Road
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.
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 ...
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Sickle Cell and Its Peculiarities (I)
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.
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 peop...
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Sickle Cell and the Work Place
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.
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 ...
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Sickle Cell Disease in the Emergency Department: Confronting Barriers to Care
“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.
“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...
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Sickle Cell Disease isn’t Laughable, But It Has a Comedic Ambassador — Kier “Junior” Spates
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.
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 ...
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Sickle Cell Patients Endure Discrimination, Poor Care And Shortened Lives
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.
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 my...
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Sickle Cell Survivor’s Twin Mission: Advocacy and Research
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.
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 s...
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Sickle Strong Initiative – Dr. Marie Ojiambo
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 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 no...
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The Bad Blood: My Life With Sickle Cell Anaemia
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?
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 ...
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The Green Family Story
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.
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...
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The Rise and Fall of My Mental Health With Sickle Cell
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.
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 ...
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The Warrior Series
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.
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 ...
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The Ways I Made Hydration a Habit
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.
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 t...
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These people living with an invisible condition are doing their best to raise awareness about it
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.”
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....
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Tionne ‘T-Boz’ Watkins to dish on her Incurable disease, TLC Stardom and left eye’s death in new memoir
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.”
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 ...
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TLC’s Tionne ‘T-Boz’ Watkins on Living With Sickle Cell Disease
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.
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 ...
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Today’s Faces of Sickle Cell Disease: Cassandra Trimnell
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.
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...
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Today’s Faces of Sickle Cell Disease: Deidra Flowers-Williams
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.
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 co...
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Today’s Faces of Sickle Cell Disease: Jeffrey Zuttah
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.
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 a...
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Today’s Faces of Sickle Cell Disease: Jennelle Stephenson
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.
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 ...
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Today’s Faces of Sickle Cell Disease: Kirti Dasu
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.
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, ...
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Today’s Faces of Sickle Cell Disease: Mercy Mendoza
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.
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 doctor...
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Today’s Faces of Sickle Cell Disease: Jennifer Nsenkyire
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.
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-...
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Today’s Faces of Sickle Cell Disease: Marqus Valentine
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).
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 lifelo...
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Today’s Faces of Sickle Cell Disease: Rodrick Murray
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.
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 20...
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Today’s Faces of Sickle Cell Disease: Tesha Samuels
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.”
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 ...
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Today’s Faces of Sickle Cell Disease: Tosin Ola
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.
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 ne...
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Tristan’s Story
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.
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...
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Unheard Cries of Despair
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!
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 hav...
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Warren rapper draws influence from sickle cell diagnosis
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.
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 f...
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What do we have to do?
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.
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 patien...
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What it’s like to be 17 and living with sickle cell disease
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.
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 rappe...
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You’d never know this 2-year-old has sickle cell anemia
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.
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...
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You’d Probably Never Know This Woman’s Had a Debilitating Disease Since Birth
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.
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 S...
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