Little Known Facts about Sickle Cell Trait and Cancer
The As One Foundation is a Houston-based charity devoted to spreading awareness of sickle cell trait to prevent deaths like that suffered by its founder’s identical twin brother due to sickle cell trait exertion a.k.a. exertional sickling. Devard Darling, former National Football League (NFL) Baltimore Ravens, Kansas City Chiefs and Houston Texans wide-receiver firmly believes his brother, Devaughn Darling, would be alive today had their coaches at Florida State University had better knowledge about sickle cell traits, such as the three main risk factors – elevation, dehydration, and exertion. “My brother’s death could have been prevented,” says Devard. “They either knew what to do and didn’t act, or they didn’t know and should have known. Either way, the As One Foundation is here today to end these types of deaths.”
A common misconception about sickle cell trait is that it is a benign condition that has no harmful physical health effects. Emerging research contrasts claims that sickle cell trait is a benign condition by highlighting adverse health effects correlating sickle cell trait with chronic fatigue, splenic infarction, extremity aches & cramping, exercise or exertional sickling, rhabdomyolysis, renal medullary carcinoma (kidney cancer,) sudden death, etc. Sickle cell trait is also classified as the top non-injury killer of athletes. Through Operation Hydration sickle cell trait education presentations, the As One Foundation breaks down the facts of sickle cell trait to close the knowledge gaps of coaches, student-athletes and parents. The As One Foundation provides a free downloadable Sickle Cell Trait Education Parents Guide that offers tips for parents of physically active youth living with sickle cell trait at www.AsOneFoundation.org/SCTParentsGuide.
Did the coaches at FSU know Devaughn was over exerted and dehydrated? Did they know that exhertion, with no time for recovery and rehydration, was a perfect storm for death in a sickle cell trait carrier? Should they have known? Did they know that Devaughn was never going to quit? When they told him ” Your body is amazing, you’ll pass out before you die,” did they know he believed them? He believed them after the first time he passed out. He believed them after the second time he passed out. He believed them so much that he let his teammates continue to carry him through the conditioning drills because he didn’t want them to start over because “if one man fails, the whole team fails.” Did his teammates know he was dying with every step? Should they have known? The mission of the As One Foundation – to educate and increase awareness of sickle cell trait… is fueled by the belief that most, including physicians and nurses, don’t understand the severe nature of sickle cell trait and also don’t know that associated deaths and hospitalizations are highly preventable.
The As One Foundation’s Sickle Cell Trait Education Symposiums actually targets students enrolled in health-care seeking career education programs such as pre-med, nursing, physical therapy, public health, and physicians assistant students. The goal of the symposiums is to offer balance to widely believed claims that sickle cell trait is generally benign and poses no adverse health effects. A second goal would be to educate emerging health professionals to assist the much-needed paradigm shift in sickle cell trait awareness within the medical community. It is a much-needed supplement to clinical school education curriculums that spend the equivalent of five minutes on sickle cell trait often leaving clinicians ill-prepared and under-equipped with knowledge gaps regarding sickle cell trait adverse health effects. The first Sickle Cell Trait Education Symposium took place on Monday, April 16, 2018, at Florida State University, which was also he and his identical twin brother, Devaughn’s 36th birthday. “It was a full circle moment for me,” said Devard. “I lost my brother at FSU and to go back to educate those students about the condition and situation that took his life, makes his death not in vain.”
An expert panel including Sugar Land’s Ritchie Johnson, Retired Registered Nurse, parent, founder of the Chris “C.J.” Johnson Foundation and Renal Medullary Carcinoma (RMC) advocate; Farron Dozier, SFC, U.S. Army (RET), Sickle Cell Trait Thalassemia Trait Carrier, Advocate and founder of WHATZ DA COUNT on Sickle Cell Trait Prevention; Maisha Pesenta, M.D., Family Medicine practitioner, Sickle Cell Trait Carrier and parent of multiple sickle cell trait carrier children, Tomia Austin, DrPH, Sickle Cell Trait Researcher, Educator & Advocate and Executive Director of the As One Foundation. Alexandria Washington, DrPH Student, Healthcare Educator, Former Student-Athlete, Sickle Cell Trait Carrier and Founder of Changing The Narrative moderated the panel that was followed by Devard Darling’s keynote address. The event concluded with a brief memorial walk through the campus to the Devaughn Darling memory tree where bubbles were released in tribute to Devaughn Darling and other fallen #TraitWarriors – a term coined for those living with or caring for someone living with Sickle Cell Trait.
The As One Foundation also tackles sickle cell trait education from a universal precautions approach by offering Operation Hydration presentations to anyone of the affected ethnicities including people of African, Latin, Asian, Indian, Irish, Italian, Mediterranean, Greek and Turkish decent. The foundation seeks to educate everyone about sickle cell trait with hopes of reaching the 16% of the 2.5 to 4 million in the United States that are not aware of their sickle cell trait status. The As One Foundation also encourages athletic departments to take universal precautions such as educating the whole team about sickle cell trait then supplement the education with three general allowances of time for warm-up, hydration and recovery for ALL athletes regardless of sickle cell trait status.
One research study suggests that educating, not just athletes on a college campus, but providing comprehensive sickle cell trait education to all students in a setting such as freshman orientation in acknowledgment of any exertional opportunity that could result from marching band, dance, intramural sports, sorority and fraternity stepping, etc. The study utilized the social ecological framework that posits the increased likelihood of behavior change – in this case, sickle cell trait awareness as prevention of associated sudden death – is result of intervention interacting along the individual, interpersonal, community, institutional and policy levels to influence lifestyles, behavior choices, and ultimately, health outcomes.
In other words, when addressing sickle cell trait knowledge gaps for the purpose of preventing sudden exertional sickling deaths, multi-level intervention is more effective than just focusing on one level. The acknowledgement of the interaction of an individual’s environment such as family, community, institutions and policy on his/her health is a comprehensive approach to sickle cell trait education utilized by the As One Foundation. Since 2007, the Foundation has provided thousands of hours of sickle cell trait education, over $100,000 in scholarships, free sports camps for hundreds of youth and recently offers free sickle cell trait testing to anyone that wants to know their sickle cell trait status, especially Houston area youth.
As a small community based organization, the As One Foundation relies on grant funding, in-kind donations and generous corporate and individual contributions. As little as $10 covers the cost of a free individual sickle cell trait screening. The Darling Dash 5k/1k, a memorial race to commemorate Devaughn Darling’s life and to shed light on sickle cell trait, is the As One Foundations annual effort to raise funds to support sickle cell trait education and screening efforts. The 9th Annual Darling Dash 5k/1k is scheduled for Sunday, February 24, 2019 at Stude Park in Houston, Texas. An early bird registration discount is available throughout the month of September for Sickle Cell Awareness Month.