Sickle Cell: Not Just a Black Disease or Trait
Considered the most common genetic blood disorder in the world, sickle cell affects 300 million people worldwide. In the United States, most of the 4 million affected with sickle cell trait, including the 18,000 Houstonians with sickle cell trait are still not aware that sickle cell is not just a Black or African American condition but, in fact, affects people of African, Asian, Indian, Latin, Mediterranean, Italian, Greek and Turkish descent. In other words, anyone, including Caucasians or White people can have sickle cell disease or sickle cell trait.
Sharing this information about sickle cell trait is the everyday work of Houston-based charity, the As One Foundation, founded by sickle cell trait carrier and former Houston Texan, Devard Darling who lost his identical twin brother to exertional sickling in 2001 at Florida State University during off-season workouts. “There are so many people with sickle cell trait that have no idea what it is, or how it can effect them,” said Darling. “Especially those who think this it is only in African Americans.”
Darling is credited with helping a young Houston-area couple whose son was born with sickle cell trait. (Names have been changed to preserve anonymity.) Sarah and Matthew had attended an As One Foundation fundraiser where they heard Darling share the story of losing his identical twin brother to sickle cell trait complications. They’d also learn that Devard, who also carries the sickle cell trait, was a multi-year professional athlete in the National Football League (NFL) whose career was in no way limited by his sickle cell trait status.
When they received the letter in the mail informing them that little Matty, their brand new baby boy, was positive for sickle cell trait, they didn’t panic. They had learned at the As One Foundation event that virtually anyone of any ethnic origin could have sickle cell trait. Little Matty is blond and blue-eyed and to the naked eye looks White, and he has sickle cell trait. Turns out, Matthew, the father, is a sickle cell trait carrier and the parent that passed the genetic trait to his son, little Matty. His parents are grateful to have learned about sickle cell trait through the As One Foundation event. This experience is fulfillment of the organization’s mission to educate and increase awareness about sickle cell trait while encouraging youth to achieve their dreams in the face of life challenges.
The approximate 18,000 sickle cell trait carriers in the Houston area are the primary target audience of the events and activities of the As One Foundation’s sickle cell education program called Operation Hydration. The diversity of Houston makes it a prime market for awareness. Sickle cell trait affects 4 million people in the United States in comparison to 90,000 with sickle cell disease/anemia. People of African descent are affected disproportionately for both sickle cell trait and sickle cell disease, yet, sickle cell trait is only studied the equivalent of five minutes in a typical medical school curriculum. Even more surprising to some is the fact that many of the 4 million carriers of the sickle cell trait are not even aware of their positive trait status.
Sickle cell is an inherited blood disorder, meaning it cannot be developed. You’re either born with it or not. It is passed down to your from either one or both parents. Sickle cell trait carriers have inherited one abnormal gene from one parent. People with sickle cell disease have inherited a total of two abnormal genes – one from each parent. As of 2006 all newborns are screened for sickle cell in the United States.
In the event of a positive sickle cell disease diagnosis, the parent is customarily contacted immediately and referred to a hematologist for specified care. In the event a positive sickle cell trait diagnosis is determined, the parents are commonly sent a letter by mail informing them of the sickle cell trait diagnosis. Though the process varies from state to state, the letter generally offers brief family planning advising against the carrier procreating with another carrier to lower the risk of a sickle cell disease or sickle cell trait birth.
When two parents of any ethnicity are sickle cell disease positive, there is a 100% chance of producing a sickle cell disease birth. When one parent has sickle cell disease, there is a 50% chance of producing a sickle cell disease birth and a 50% chance of having a child with sickle cell trait. When two parents are sickle cell trait carriers, there is a 25% chance they’ll produce a sickle cell disease birth and a 50% chance they’ll produce a sickle cell trait birth. When one parent is a sickle cell trait carrier, there’s a 50% chance of producing a sickle cell trait birth and a 0% chance of producing a sickle cell disease birth.
Operation Hydration presentations also include information of risks associated with sickle cell trait – exertion, elevation and dehydration. Although African Americans and people of African descent are disproportionately affected by sickle cell trait, when it comes to sickle cell trait athlete deaths, black males are not exclusive. In June of 2016, a white male high school student-athlete by the name of Karson Cross, died within the first hour of football practice due to sickle cell trait complications, including exertion. Karson and both of his parents are reported to identify as White American.
Among many others, these facts are shared through the As One Foundation’s Operation Hydration – Sickle Cell Trait Education program. Participants, usually coaches, physical education teachers, student-athletes and parents, are anonymously pre- and post-tested to measure their sickle cell trait knowledge level. Results yield an average 80% knowledge gain which continues to provide the motivation of the As One Foundation to spread sickle cell trait awareness to every nook and cranny of Houston and beyond.
To book an Operation Hydration – Sickle Cell Trait Education presentation, to inquire about Darling Dash sponsorship or to make a generous donation, visit www.AsOneFoundation.org, email Tomia@AsOneFoundation.org.