Tackling sickle cell
Ex-LSU player helps raise awareness; run scheduled
Ryan Clark, former LSU football player and current Pittsburgh Steelers safety, is ambassador for Baton Rouge’s first Sickle Cell Community Walk/Run to be held downtown on Saturday.
“There’s a lack of awareness and lack of knowledge” about sickle cell disease, Clark said.
Clark was diagnosed in his college years with sickle cell trait, an illness that affects approximately one in 12 African Americans.
Sickle cell trait doesn’t usually carry the symptoms of sickle cell disease, but in 2007, when the Steelers played the Denver Broncos in Colorado, Clark suffered a medical crisis that ultimately ended in surgeries to remove his spleen and gallbladder.
High altitudes can be harmful for people with sickle sell trait, according to the Centers for Disease Control and Prevention, and the Broncos’ “mile-high” stadium is that high above sea level.
“I was in pain constantly; I couldn’t stand up straight,” said Clark, who lost more than 30 pounds before his symptoms were correctly diagnosed, leading to surgery.
It made national sports news when the Pittsburgh Steelers decided, out of caution, to hold Clark out of this year’s wildcard game against the Broncos in Denver.
While this season’s football training will preclude his being at this weekend’s walk, organized by the Baton Rouge Sickle Cell Anemia Foundation, Clark said he’s glad to support the event and is featured in radio and TV ads as well as billboards promoting the walk/run.
“It’s important for me to be a part of this,” said Clark, 32, a native of Marrero who has three children with his wife, Yonka.
Clark said he’s recently begun working with medical staff of the University of Pittsburgh Medical Center to found a research center there for sickle cell disease, also known as sickle cell anemia.
The disease is inherited from both parents, although sickle cell trait, such as Clark has, is inherited from only one parent. The symptoms of sickle cell disease are caused by red blood cells, normally shaped like a disc, that form an abnormal crescent or sickle shape, according to the National Institutes of Health.
The abnormally shaped cells deliver less oxygen to the body’s tissues and can break into pieces that can interrupt healthy blood flow, the institution reports.
Patients with sickle cell disease may suffer episodes of pain, sometimes severe enough to require hospitalization. There may be fatigue, poor eyesight, jaundice and infections of the bones, gallbladder or lungs, according to the NIH.
The disease is particularly common among people whose ancestors came from sub-Saharan Africa, Spanish-speaking regions in the Western Hemisphere or Mediterranean countries.
In the U.S., African Americans face the highest incidence of the disease, with sickle cell disease occurring in about one of every 500 African-American births. In the past, patients often died between ages 20 and 40, according to the NIH, but with current management of the disease, patients today can live into their 50s or beyond.
Treatment includes blood transfusions and pain medicines. Bone marrow transplants can cure sickle cell disease, but patients aren’t often able to find well-matched bone marrow donors, the NIH reports.
And lack of insurance can be an obstacle, too, said Lorri Burgess, executive director of the Baton Rouge Sickle Cell Anemia Foundation, which serves an 11-parish area.
“I have a client base of 500. Last year, 10 of those died. They were all under the age of 50,” Burgess said.
The Baton Rouge Sickle Cell Anemia Foundation, which has served the area for 38 years, is a member organization of the Sickle Cell Disease Association of America.
The foundation provides financial support services to patients in need, provides treatment support to enhance the quality of life for those suffering from the disease and promotes local and national research in support of a cure, according to its literature.
The walk on Saturday will begin at Galvez Plaza on North Boulevard downtown, with registration beginning at 8 a.m. The 5K run will begin at 9 a.m., and the 1-mile walk/run will begin at 9:30 a.m. The registration fee is $20, and registration can be done online at http://www.brscaf.org.