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Sickle Cell Awareness Thread: Sickle Cell Awareness Month 2023! UPDATE: FDA APPROVES GENE THERAPY

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Should You Get the COVID-19 Vaccine if You Have Sickle Cell Anemia?


Meg Burke, MD
Meg Burke, MD, is a board-certified physician and medical writer. She is a practicing primary care geriatrician.
February 4, 2021, 1:55PM (PT)

Key takeaways:
  • Sickle cell anemia can put you at increased risk of serious complications from COVID-19.
  • All routine vaccines are safe, effective, and strongly recommended for people with sickle cell anemia.
  • Adults and children over 16 years old with sickle cell anemia should get the COVID-19 vaccine.

Infection with COVID-19 is a new and serious threat for people with sickle cell anemia. The virus can take advantage of the weakened immune systems of people with the disease and cause devastating harm.
Luckily, there are steps that at-risk people can take to minimize their risk of infection with COVID-19. Medical advances, including vaccines and new treatment protocols, are bringing hope that we can provide more protection to people with sickle cell anemia (and other high-risk conditions) while there is still ongoing community spread of the virus.
This piece addresses the unique challenges that individuals with sickle cell anemia are facing during this pandemic and why they should prioritize getting the COVID-19 vaccine.
What is sickle cell anemia?
Sickle cell anemia (also called sickle cell disease) is a disorder of red blood cells. People are born with sickle cell anemia (you cannot catch it).
Red blood cells carry oxygen from your lungs to the rest of your body. In sickle cell anemia, the red blood cells are a different shape and size than normal red blood cells, which can lead to serious issues. With even a small problem (like not drinking enough water or getting a minor infection), people who have sickle cell anemia can feel very sick. They may require hospitalization for treatment and pain control. They can also develop complications like acute chest syndrome, which can be deadly.
Who is most likely to be diagnosed with sickle cell anemia?
Almost 100,000 people in the United States have sickle cell anemia. Most of the people diagnosed are Black or African American. About 1 in every 365 Black or African American babies born in the United States has sickle cell anemia.
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Are people with sickle cell anemia at a higher risk for severe COVID-19?
Yes, they are. People with sickle cell anemia who have COVID-19 infection are more likely to be hospitalized and to require intensive level care (ICU) in the hospital. They are also more likely to die from COVID-19 than people without sickle cell anemia.
One study followed 178 people with sickle cell anemia and COVID-19 infection. The average age of people in the study was less than 40 years old. Sixty-nine percent of people needed to be treated in a hospital, and 7% of them died.
Is the COVID-19 vaccine safe for people with sickle cell anemia?
Yes, the COVID-19 vaccine is safe for people with sickle cell disease.
All routine vaccines for adults and children are recommended for people with sickle cell anemia. There are studies that show that two common vaccines, the pneumococcal and influenza (“flu”) vaccines, are effective in people with sickle cell anemia. People with sickle cell anemia should be prioritized as a high-risk group to receive the yearly influenza vaccine.
There are many similarities between the COVID-19 vaccines and other vaccines that work for people with sickle cell anemia. So there is no reason to think that the COVID-19 vaccines would not be safe or effective in people with sickle cell anemia. In fact, the Centers for Disease Control and Prevention (CDC) has recommended that people with sickle cell disease be prioritized to receive the vaccine (more on this later).
How does the COVID-19 vaccine work?
The two FDA-approved COVID-19 vaccines, Pfizer/BioNTech and Moderna, work by giving your cells “directions” for how to make a small piece of protein that belongs to the COVID-19 virus. Once the small piece of protein is made, your immune system (the system in your body that fights infections) recognizes this protein as something it has never seen before.
This kicks your immune system into gear to start making tools (“antibodies”) to fight off the virus. It makes a small number of antibodies after the first dose of the vaccine, and even more antibodies after the second vaccine because it is better prepared to respond to the protein.
Then, when and if you are exposed to the COVID-19 virus, your body already has the tools to fight it off and prevent you from developing symptoms and serious illness from the actual virus.
Are people with sickle cell disease considered high priority for COVID-19 vaccination?
The CDC recognizes sickle cell anemia as a condition that puts people at high risk for serious illness from COVID-19. They recommend that adults 16 to 64 years old with sickle cell anemia receive the vaccine in Phase 1c. This is after Phase 1a (healthcare providers and long-term care residents) and Phase 1b (people ≥75 years old and essential workers who are not healthcare providers). Currently in the United States, each state is deciding their priority groups for giving out the vaccine on their own.

Can the COVID-19 vaccine interact with any medications for sickle cell disease?
We don’t know the answer to this question. We do know that the most common medication used to treat sickle cell anemia, hydroxyurea, does not affect the immune response that comes from other commonly used vaccines. People on other medications that treat sickle cell anemia, such as voxelotor and crizanlizumab, should discuss their unique situation and the COVID-19 vaccine with their healthcare provider.
Other considerations for people with sickle cell disease
There are two groups of people with sickle cell disease who either are not able to receive the vaccine or must wait before they take it.
Under age 16
The current COVID-19 vaccines are not approved for anyone under age 16, including people with sickle cell anemia. There are currently active trials looking to see how safe the vaccines are and how well they work in people younger than 16 years old. Vaccine recommendations will be reconsidered once the vaccines are approved for this group.
Already had COVID-19
The approved vaccines are safe to give to people who have already had COVID-19 infection. But people who have received certain treatments, including monoclonal antibodies or convalescent plasma, should wait at least 90 days from the last day of treatment to receive the COVID-19 vaccine. This is to prevent the treatment that they received from making the vaccine less effective.
How can people with sickle cell anemia protect themselves against COVID-19 until vaccination is possible?
People with sickle cell anemia should follow all CDC guidelines to protect themselves against COVID-19 infection before they receive the vaccine. The three most important guidelines are below:
  • Wear a mask that covers your mouth and nose when you are around anyone outside of your household.
  • Stay distanced from other people, even when you are wearing a mask. The closest that you should get to other people is 6 feet, but farther away is better.
  • Avoid any crowded spaces or unnecessary travel.
The bottom line
People with sickle cell anemia are at increased risk for serious COVID-19 infections. We have safe and effective vaccines that protect against COVID-19 infection. People over age 16 with sickle cell anemia should prioritize receiving their COVID-19 vaccine when it is available to them.

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also discussing sickle cell and genetic modification.



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Human Nature

We can now edit the human genome with a tool called CRISPR. But how far should we go?
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‘Human Nature’: Film Review

Adam Bolt's slick CRISPR documentary brings together scientists, journalists and test subjects for an engaging look at genetic modification.
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​
 
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These Sisters With Sickle Cell Had Devastating, and Preventable, Strokes
Kyra and Kami never got a simple test that could have protected them. Their story exemplifies the failure to care for people with the disease, most of whom are Black.
Kyra, left, and Kami Crawford, of San Antonio, are both living with sickle cell, a common complication of which is stroke.Credit...

By Gina Kolata
Photographs by Ilana Panich-Linsman
  • Published May 23, 2021Updated May 24, 2021, 3:38 a.m. ET
SAN ANTONIO — It was 4 a.m. on a Sunday when Dana Jones heard an ominous sound, barely audible over the whirring of box fans, like someone struggling to breathe. She ran down the hall and found her daughter Kyra, age 12, lying on her back, gasping for air. Terrified, she called 911.
A police officer, the first to arrive, dashed into Kyra’s bedroom, threw the slender girl over his shoulder and laid her on a leather sofa in the living room. He asked her mother, an oral surgery technician, to give her CPR.

Kyra’s lips were ice-cold. An ambulance whisked the girl to Methodist Children’s Hospital, where staff members swarmed her and put her into a medically induced coma.

Kyra, who has sickle cell, had suffered a devastating stroke — her second — a common complication of this inherited disease, which afflicts 100,000 Americans, most of them Black. She most likely would never have had the strokes if she had been given an annual screening test and treatment proven more than two decades earlier to prevent nine out of 10 strokes in children with the disease and recommended by the National Institutes of Health. But like countless other children with sickle cell, she was never screened.



This is a paradoxical moment for people who have this painful, deadly disease. For the first time, gene therapies that have advanced through clinical trials offer the real possibility of a cure.

But Dr. Francis Collins, director of the National Institutes of Health, said the lack of attention paid to sickle cell historically “is one more reflection of the fact that we do not have equity in our country.”


Some doctors and researchers believe the national reckoning on race sparked by the pandemic’s devastating impact on people of color, and the Biden administration’s pledge of a broad assault on racial inequities in American medical care, could make this a singular moment for advancing the fight against sickle cell.

Even so, Kyra’s strokes are a striking case study of the broad national failure to provide even the most basic treatments to people with sickle cell. Faulty care and sluggish research are symptoms of what sickle cell specialists say is the deplorable legacy of neglect of Americans with the disease.


Kami and Kyra’s medications, most of which are prescribed to control pain.

A third as many Americans have cystic fibrosis, a genetic disease that is of comparable seriousness to sickle cell but that primarily affects white children, yet it gets “seven to 11 times the research funding per patient, which results in disparate rates of development of medications,” according to a recent opinion piece in The New England Journal of Medicine. Only four medications are approved by federal regulators for sickle call, and 15 for cystic fibrosis.

The screening test for strokes in children with sickle cell has been proven for decades, as has the treatment if it detects markers for stroke risk.
“It’s such a simple, painless and harmless test,” said Dr. Robert Adams, the neurologist whose study, published in The New England Journal of Medicine in 1998, proved the effectiveness of a scan of the head known as Transcranial Doppler ultrasound and blood transfusions for those at high risk for strokes. “It’s not rocket science.”

The National Institutes of Health issued a statement in 2002 recommending that children with sickle cell get screened every year. Then, in 2014, a consensus panel of experts convened by the National Institutes of Health issued guidelines repeating the advice.
But the message often did not get through, said Dr. Peter Lane, director of the sickle cell disease program at Children’s Healthcare of Atlanta and a pediatrics professor at Emory University. “There’s often a gap between the development of improved treatments and delivery of those treatments to the patients who need them.”



With sickle cell, he said, the gap is even bigger. “A big part of the challenge of sickle cell is that it impacts predominantly disadvantaged folks,” he said.

Kyra’s mother has learned, to her eternal regret, about the system’s failings. Ms. Jones said she was shocked when a new doctor told her about the screening test that could have prevented disabling strokes that struck both of her daughters, Kyra, who turns 16 this weekend, and Kami, now 17.
Kyra’s strokes, in 2015 and 2017, severely damaged her brain and caused a learning disability that meant she had to repeat sixth grade and years later still needed a tutor to shadow her in school. Her mother said that no one informed her until recently about the ultrasound test that was offered by a hospital just a 45-minute drive from their home — and that could have helped prevent the damage to both girls.

She still feels guilt and anger. She tosses in bed at night thinking, “What if?” How could the girls’ original doctor not have mentioned it?
“I took everything he said as Bible,” she said.

Researchers have repeatedly found that many children with the disease do not get the test or do not get it annually, as recommended. A new study, based on a survey of the largest group of children with sickle cell to date and recently published in The Journal of Pediatric Hematology/Oncology, again documented the dire situation.

Ms. Jones and her former husband both carried the mutated hemoglobin gene that causes sickle cell if a child inherits it from both parents. Both daughters were born with the disease.

Dr. Julie Kanter, a hematologist at the University of Alabama at Birmingham and director of the university’s adult sickle cell clinic, reviewed medical records of 5,347 children at 28 medical centers large and small, including academic sites as well as smaller medical centers. Only 30 to 75 percent of the children had gotten the recommended screening, depending on the center. On average, just 48.4 percent got the ultrasound. The rates were independent of the medical center’s size or academic affiliation.

“The rate is terrible, actually worse than we thought it would be,” Dr. Kanter said.

The researchers surveyed parents and caregivers and learned that some doctors failed to tell parents about the screenings. Some parents, even if told, had not understood their critical importance. (Dr. Kanter wants to rename the test “stroke screen” rather than Transcranial Doppler ultrasound so its purpose is clearer.) Some medical centers with special sickle cell clinics failed to consistently follow up with families who missed appointments.
There were also logistical obstacles. Sometimes medical centers offering the test were far from the homes of children with the disease. Some parents had trouble getting time off from work to take their children for testing. And the centers that did the tests were sometimes out of a family’s insurance network.

Ultrasound screens aren’t the only needed medical care inconsistently given to children with sickle cell. Hydroxyurea, an inexpensive generic drug, around since the 1980s, can reduce the risk of irreversible damage to organs and the brain. But it is woefully underused. Guidelines from the National Institutes of Health published in 2014 say all children and adolescents should take it, as should adults with three or more pain crises in a year or other serious complications.

A recent survey funded by the National Institutes of Health of 2,200 sickle cell patients from eight sites found that just 48 percent of patients were taking hydroxyurea regularly. Interviews with doctors who did not prescribe the drug revealed that many were unfamiliar with it while others were afraid hydroxyurea, which is also a cancer treatment at much higher doses, might cause cancer, although at the lower sickle cell dose it does not.
Another recent study, of Medicaid patients in North Carolina, found that only 32 percent of 2,790 Medicaid patients with sickle cell even had a prescription for hydroxyurea and just 31 percent of those patients took the drug regularly.



“To have teenage patients who never heard the word hydroxyurea — that’s preposterous,” said Dr. Patrick McGann, a sickle cell specialist at Cincinnati Children’s Hospital who puts all his patients on the drug.

In sharp contrast, chronic diseases whose patients are predominantly white, including type 1 diabetes and cystic fibrosis, are typically assigned to a nurse case manager who keeps in touch and manages the multiple medical appointments needed to prevent complications.
In sickle cell, said Dr. Michael DeBaun, a sickle cell specialist at Vanderbilt University, “the model of medical care is often reactionary to medical problems.”

The burden falls on parents to navigate the nation’s complicated, fragmented health care system.


‘Where’s the responsibility here?’
The idea for the stroke screening test occurred to Dr. Adams 30 years ago when he was a young neurology faculty member at the Medical College of Georgia in Augusta. One night, a 3-year-old boy with sickle cell was admitted to the hospital with a massive stroke that had destroyed most of his brain. The toddler’s red blood cells, shaped like sickles instead of disks, had gotten stuck in blood vessels to his brain, injuring their fragile linings and blocking blood flow.



“I tried to explain to this mother why her beautiful son had had this terrible stroke,” Dr. Adams said. “I tried to prepare her for what I knew was the eventuality — he had no chance to survive.”

Dr. Adams thought of how he would have felt if this tragedy had struck his own son, Christopher, who was then 9. That night, he determined to find a way to prevent such strokes.

He hypothesized that Transcranial Doppler ultrasound, or TCD, could detect children at high risk before they had strokes. The ultrasound test could measure the rate of blood flow into the brain and detect blood vessels that were partly obstructed by sickle cell. Then blood transfusions might prevent the strokes in the endangered children.

The N.I.H. tested his idea with a study that began in 1994. Children whose ultrasounds indicated high risk were randomly assigned to have transfusions or not.

The study was abruptly stopped in 1997, ahead of schedule, because children at risk who got transfusions had an annual stroke rate of less than 1 percent. Those who did not get transfusions had a 10 percent per year chance of having a stroke. Sickle cell experts were elated.
But decades later, Dr. Adams, now a distinguished professor of neurology at the Medical University of South Carolina, is alarmed that the health care system has failed to consistently use this knowledge that could have prevented so much suffering.
Hospitals must make a concerted effort to reach families with children who have sickle cell, he said.



“Where’s the responsibility here?” he asked.

“My BMW dealer knows when I am due for an oil change,” he said. Surely, he said, clinic staffs can be just as vigilant in contacting families.
“If you know who your patients are,” he said, “you have to keep track of them.”

Life with sickle cell

Ms. Jones and her former husband, the girls’ father, both carried the mutated hemoglobin gene that causes sickle cell if a child inherits it from both parents. Both their daughters were born with the disease.

Their symptoms began when they were babies, screaming in fierce pain when the distorted cells got caught in blood vessels.

When Kami was 2 years old, Ms. Jones found a caring hematologist, Dr. Mahendra Patel. But Ms. Jones said he never told her about the screening test to detect whether her daughters were at risk for strokes.

The girls’ new doctor, Dr. Melissa Frei-Jones, a pediatric hematologist at the University of Texas Health Science Center at San Antonio, confirmed that the girls had never gotten the test, and Methodist Hospital, where Dr. Patel practiced, confirmed that it did not offer the test.

During a remote gym class, Kyra began to cry from pain in her legs from jumping up and down.

Dr. Patel declined repeated requests for interviews through his office assistant, who said that the girls were no longer his patients and that he did not have time to discuss their care, including whether he ever mentioned the TCD test.

Kyra had her first stroke at age 10 on a steamy night in 2015 as she watched a basketball game with her mother and sister. She had been complaining for weeks of headaches, but that night, the pain was so bad that she screamed in agony.

Ms. Jones rushed her to the hospital. As Kyra slept that night, her mother tapped her. Kyra opened her eyes, but Ms. Jones recalled, “she looked through me like I wasn’t there.”

Terrified, Ms. Jones ran into the hall and cornered a nurse, begging for help. The nurse called a code blue, a life-threatening emergency. Medical personnel rushed into the room, pushing Ms. Jones aside.

Doctors at the hospital put Kyra in a medically induced coma for a week and a half to allow her brain to heal.

When she woke, Ms. Jones was at her bedside. Kyra looked up and said, “Hi, Mommy.”

Ms. Jones wept in relief.



But Kyra had large gaps in her memory. Her reading level had plummeted. She had forgotten how to tell time.

“I couldn’t remember anything,” Kyra said. “Like math. I didn’t even know what 1+1 is. I didn’t know how to divide.”

And she was unable to walk. She stayed in the hospital for a month, working with a physical therapist, progressing from using a walker to wobbly steps on her own.

With determination and special tutoring, she managed — barely — to get through fifth grade, but sixth grade defeated her. She had to repeat it.
Two years later when she was 12, Kyra had her second stroke deep in the middle of that night when her mother heard her gasping for breath.
Kyra, still struggles in school, with a learning disability so severe that — before Covid forced her to do remote schooling — she had a tutor who shadowed her and helped in her classes. She also had two special study periods a day with a teaching assistant standing by to help with schoolwork
A year older than the other students in her grade, Kyra said she found it hard to fit in.

During a tutoring session on a Friday afternoon last year, a chatty girl sitting across the table from Kyra told her, “I have come to the conclusion that I am not smart enough to do eighth-grade science.”



Missed opportunities
If it weren’t for the medical staff at Methodist Hospital, where Kami and Kyra have long received care, Ms. Jones might never have learned about the TCD ultrasound test. One day in 2019 a doctor there handed Ms. Jones a Post-it note with Dr. Frei-Jones’s name and phone number on it.
At their appointment, Dr. Frei-Jones ordered M.R.I. scans of the girls’ brains to look for stroke damage. Kami’s showed little white spots in her frontal lobes, signs of a silent stroke that had destroyed brain cells. The results explained why she has trouble with organization. She uses every planning tool available to compensate for her losses, including lists and color coding with highlighters.

Kyra, too, had those white spots on her frontal lobes, but she also had big areas toward the back of her brain where tissue had been destroyed by her strokes.

A year ago, Dr. Frei-Jones showed Kyra’s brain scan to Kyra and her mother.

Seeing it, Ms. Jones said, her eyes welled with tears. Kyra was shocked and silent.



Dr. Frei-Jones told Kyra that it was this brain damage that explained why she struggled in school and why, at times, she was unable to find the words to say what she meant.

Dr. Frei-Jones advised — and Kyra agreed — that she should have transfusions every three weeks to reduce her stroke risk and that Kami should have them too.

Transfusions are a major commitment — an all-day ordeal. The girls have to miss school and Ms. Jones misses work. Kyra and Kami both feel tired and slightly ill after getting one.

Ms. Jones is so terrified they will have another stroke that she sleeps with a baby monitor in the girls’ room so she can hear if anything goes wrong in the night.

She knows, to her everlasting regret, that if she had been seeing Dr. Frei-Jones from the start, her daughters would most likely never have had the strokes that damaged their brains.

“I believe that wholeheartedly,” she said. “If things had been handled differently, their strokes could have been prevented.”
 
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Devard Darling carries on legacy of twin Devaughn with foundation to learn about sickle cell
Antwan Staley
Tallahassee Democrat

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While growing up in the Bahamas, Devard Darling and his identical twin brother Devaughn always had aspirations of playing football at Florida State.
The Darling family moved to Houston right before high school, and that's when the brother's dreams started to become a reality. They both not only got to attend FSU but would also be coached by Bobby Bowden, who they grew up idolizing.
But tragedy struck during their time in Tallahassee. During offseason drills in February 2001, after his freshman season on the team, Devaughn collapsed and later died. An autopsy revealed Devaughn carried the sickle cell trait, which doctors said may have contributed to his death, along with exertion and dehydration.
20 years after Devaughn's death, Devard is celebrating his brother’s life while trying to educate people about the effects of the sickle cell trait.


Devard’s organization, the As One Foundation, is sponsoring a virtual race called Darling Dash, a nonprofit fundraiser with the hopes of raising money to prevent deaths like Devaughn's.
FSU football spring previews
Devard also created Operation Hydration, which seeks to create earlier awareness of the correlation between sickle cell and lack of hydration – preventing sports-related deaths due to dehydration and exhaustion. It’s an awareness campaign that provides an annual training program for high school coaches, other athletic-related staff, and student-athletes.


"Having the sickle cell trait is very preventable when it comes to athletic-related deaths, and that's what the As One Foundation and the Darling Dash are all about," Darling told the Democrat. "Darling Dash is the main fundraiser that we have for the foundation.
"We always want to celebrate Devaughn and celebrate Devaughn’s life and what he stood for. This is a heartfelt organization that has grassroots that are truly trying to do great work out here. Sickle cell trait, sickle cell is not just a Black disease as it sometimes gets labeled, as it affects everyone.
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"We are all in this thing together. We are all as one, and that's where the As One Foundation came from. Two hearts beating as one."
Devard Darling's sickle cell outreach includes more than fundraisers
Darling transferred to Washington State from FSU shortly after his brother's death. That's when he began to learn more about the sickle cell trait and how it is preventable.
Darling started the As One Foundation in 2007 after he was established in the NFL, with the help of Dr. Tamia Austin, who is the executive director.
It was Austin's idea to create Darling Dash, which is in its 11th year.
This year's event is virtual because of the COVID pandemic. The event is $40 and runs until the end of March.
Together, Darling and Austin have worked endlessness on new ways of educating the public about the dangers of not knowing if you have the sickle cell trait. Darling has been to symposiums in various cities, talking to coaches and trainers about the dangers of players not taking proper care of themselves and getting checked for the sickle cell trait.
What is the sickle cell trait?
Testing for the sickle cell trait requires just a simple blood test. It is a genetic trait that can be found in people of African, Indian, Asian, Mediterranean, Latin, Turkish, Italian, and Greek descent. So, it doesn’t just affect African-Americans.
The National Collegiate Athletic Association (NCAA) does mandate sickle cell trait testing for all student-athletes. But high schoolers have also died due to exertion & dehydration from complications from the trait, as 4 million people in the U.S. with the sickle cell trait have it and don’t even know it.

"Getting tested as most babies in most states are tested for the trait, but the results go inside a drawer, and you never look at them again,' Darling said. "Getting tested, knowing that you have the trait and being educated on it and continuing to hydrate yourself.
"Being aware that you're in high altitudes and making sure you're hydrated and have enough oxygen. Eating right, eating on time. These are some of the things that you have to look out for and educate yourself on."


A Seminole for life
Despite the terms in which he left FSU, Darling still considers himself a Seminole. His brother Devaughn was even buried in a Seminoles' jersey. After Devaughn’s death, Devard didn't want to leave FSU. But he also has the sickle cell trait and was not cleared by FSU trainers to return to play after Devaughn's death.
That's when Devard transferred to Washington State, where he played two seasons and caught 106 passes for 1,630 yards and 18 touchdowns before being drafted by the Baltimore Ravens in 2004.
"Growing up in the Bahamas and being young boys, Florida State was always one of our favorite teams," Darling said. "Watching Charlie Ward, Warrick Dunn, just all the success through the 90s, it was hard not to be a 'Noles fan, a Bobby Bowden fan.
"So when we got a chance to move to Houston in eighth grade and started playing football, that was one of the first things on our mind, getting good enough to go to Florida State and make it to the NFL.
"That was our path and made it become a reality. Unfortunately, that got cut short for Devaughn, but he lives on through me, and we continue to spread his name and have his spirit live on through the As One Foundation."

More:Florida State women's basketball player Morgan Jones named to All-ACC First and All-Defensive Teams
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Darling's ultimate goal is to work with NCAA to be the main educational platform for learning about the sickle cell trait because you can't have the disease without first having the trait. But, if Darling cannot work with the NCAA, he would love to visit individual schools such as FSU before branching out to more sports leagues.

In 2018, Darling had a sickle cell trait symposium there at FSU, and he is hoping to visit the university after the COVID pandemic is over.
"Many people, even in sickle cell communities, sometimes discredit the sickle cell trait and how much effect it has on the community as a whole," Darling said. "So, just being the number one platform for education and we want to continue to test people, text kids in high schools, the NCAA, we would love to partner with them to be the main voice for the education platform for the NCAA.
“To add sickle cell trait as a cause of death. Those are some of the plans that we have with the As One Foundation. Long term, we want to open up a facility in Devaughn Darling's name and continue to promote our education and sports. All of those things are lofty goals that we have with the As One Foundation that was started by two young boys from the Bahamas."
Reach Antwan Staley at astaley@tallahassee.com or follow him on Twitter @antwanstaley.
 
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Friday, December 13, 2002
Darling was working out with twin brother
Associated Press

s_darling_i.jpg


TALLAHASSEE, Fla. -- Florida State linebacker Devaughn Darling collapsed and died Monday after an early morning workout.


The 18-year-old linebacker from Houston was stricken shortly after 7 a.m. He had just finished intensive agility and conditioning drills with teammates, including his twin brother Devard, at the football complex.


Devaughn Darling celebrates Florida State's entry into the Orange Bowl entry after the 'Noles defeated Florida last November. He died after working out Monday.
The cause of death was not immediately determined. An autopsy, requested by school police, will be done Tuesday.


"This is standard procedure in a death of this nature," Lt. Jack Handley said of the autopsy request. "We're currently doing the death investigation."


Devard Darling, coach Bobby Bowden and other players and coaches were at the hospital when the player was pronounced dead by an emergency room physician.


"Obviously it's a very emotional time for everyone associated with our program," athletic director David Hart said. "We're all in a state of shock."


Bowden was spending the rest of the day with the Darling family.


"Right now we're all pretty dazed," Bowden said. "I think all of our thoughts, prayers and wishes should be with his mom, his dad, his twin brother and all of the family members."


The school deployed about 10 counselors and team chaplain Clint Purvis to meet with teammates. Many were still sobbing several hours later as they talked in disbelief.


"Tragedies are never something you get through very easily," Hart said. "We will continue to focus on our players first and foremost."


The Garnet and Gold souvenir store near the campus already had changed its sign to read: "Devaughn Darling, We Miss You."


Florida State athletes receive a physical that includes an EKG when they report for football practice in the summer, spokesman Rob Wilson said.


Devaughn Darling, one of the youngest players on the team, started on special teams last season as a freshman. He was to begin spring practice next week as a starter at outside linebacker.


He was credited with 11 tackles in seven games during the season, including two solo stops against Clemson.


Although tragedy has visited the football team two other times in the last 15 years, this was the first time a death resulted during an organized school activity.


In 1992, Michael Hendricks was electrocuted during a visit home.


Offensive tackle Pablo Lopez was shot and killed after a campus argument on Sept. 13, 1986, just five days after he was married.
 
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DARLINGS TO SUE SCHOOL FOR NEGLIGENCE

Attorneys representing the family of former Florida State linebacker Devaughn Darling, who died after an offseason conditioning drill in February, have notified university officials that they inten…
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DARLINGS TO SUE SCHOOL FOR NEGLIGENCE
Josh Robbins Tallahassee BureauDaniel Mitchell contributed to this reportSOUTH FLORIDA SUN-SENTINEL

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Attorneys representing the family of former Florida State linebacker Devaughn Darling, who died after an offseason conditioning drill in February, have notified university officials that they intend to file a negligence suit against the school.

Under Florida statute, plaintiffs must inform state agencies of their intent to sue before filing a lawsuit.

Darling's parents, Dennis Darling Sr. and Wendy Smith, have retained a law firm headed by famed trial lawyer Willie E. Gary. Gary's firm has a history of winning large judgments in personal- and family injury cases.

In a letter sent to the university dated Aug. 8, one of Gary's law partners alleges Darling "experienced exhaustion, dizziness and other signs of extreme fatigue that were ignored by trainers and/or coaches" and that Darling "was deprived of water and/or other fluids during these drills."

This, lawyer Michael A. Lewis wrote, resulted in Darling's subsequent collapse and death.

Michael Cramer, FSU's deputy general counsel, wouldn't comment, and FSU Athletic Director Dave Hart couldn't be reached for comment. Gary and Lewis didn't return phone messages left at their Stuart-based law office.

Around 7:15 a.m. on Feb. 26, Darling collapsed at the Moore Athletic Center after a 90-minute workout with teammates known as "mat drills." He was pronounced dead at the Tallahassee Memorial Regional Medical Center emergency room at 8:37 a.m.

The Leon County Medical Examiner's office didn't find a conclusive cause for Darling's death, but discovered he possessed a sickle-cell trait that has been linked in some studies to sudden-exercise deaths. An investigation conducted by FSU police and released in April cleared coaches and trainers of blame in Darling's death.

Devard Darling, Devaughn's twin and former FSU teammate who also has the sickle-cell trait, transferred to Washington State, where he hopes to gain medical clearance to play football. The FSU medical staff did not clear him to return to the football team.
Defense dull

The Seminoles spent the bulk of Monday's workout preparing for Saturday's season opener at Duke. Defensive coordinator Mickey Andrews wasn't especially pleased with his unit's effort against the scout-teamers, a group of walk-ons and freshmen emulating the Blue Devils.
"It's difficult to maintain the intensity you want to play at when you're going against the scout team," Andrews said, "because No. 1, they're running an offense they're not familiar with, and, No. 2, if they were good enough to be blocking you they'd be on the other side of the field practicing [with the offense]. ...

Florida State released its season-opening depth chart Monday, revealing five senior starters. Six sophomores are listed as first-teamers on defense, including five members of the front seven.

Junior tailback Nick Maddox will handle punt-return duties while splitting kickoff returns with freshman receiver Craphonso Thorpe. ...
Coach Bobby Bowden missed Monday's practice while speaking to the Athens (Ga.) Touchdown Club.
Pope ready for Duke

Despite being held out of contact work for 11 days with a sprained neck, outside linebacker Kendyll Pope is slated to start on Saturday. Likewise, fullback William McCray, who tore a pectoral muscle during the summer, expects to play even though he did not practice during two-a-days. McCray is listed behind Randy Golightly on the depth chart.

Duke's QB can make plays

Whatever chance the Devils have of hanging with FSU will hinge on the play of junior quarterback D. Bryant. The 6-3, 213-pounder showed steady improvement last season, and has enjoyed a decent preseason as well. Bryant hit 11 of 20 passes for 88 yards and a touchdown in Duke's final scrimmage.

Bowden has taken note. "You've got a team that has found their quarterback," he said. "It seems like the last three years we've played them, they'd be this quarterback, then that one. This one wouldn't do good and they'd try this one. But now they've got their quarterback. I saw him play at the end of [last] year and he looked pretty doggone good."
 
kdogg3270

kdogg3270

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i carry the trait. No high altitude places for me :smh:
can't even begin to imagine what people with sickle cell anemia go through.
 
playahaitian

playahaitian

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