Steelers' Ryan Clark seeks sickle cell disease cure
He carries disease's trait, wants to raise awareness
September 5, 2012 12:00 PM
Steelers safety Ryan Clark, right, talks about the sickle cell cure initiative Tuesday at the team's facility on the South Side.
By Michael A. Fuoco Pittsburgh Post-Gazette
Steelers safety Ryan Clark will be on the sideline during Sunday's season opener in Denver, just as he was in January's playoff game and in so many other frustrating visits to Denver since an Oct. 21, 2007, game in which the city's high altitude nearly killed him because he carries the sickle cell trait.
Mr. Clark lost his spleen, his gallbladder, 35 pounds and nearly his football career -- not to mention his life. But, he said, his experience was nothing compared to the pain people with the more serious and potentially fatal sickle cell disease suffer on a daily basis.
"Those are my heroes," Mr. Clark said at a news conference Tuesday at which he announced his effort to find a cure for the disease that killed his sister-in-law and affects more than 70,000 Americans and millions worldwide.
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Ryan Clark's Cure League is a partnership between the football star, UPMC, the University of Pittsburgh's Vascular Medicine Institute, and the Institute for Transfusion Medicine, where former Pitt and Chicago Bears standout Jim Covert is chief executive officer.
Mr. Clark said he jumped at the chance when Mark Gladwin, director of the vascular medicine institute, approached him during the off-season to develop the partnership to raise awareness and research funding for a disease that has only one FDA-approved drug. The initiative's website is www.CureLeague.org, where donations can be made.
Like Mr. Clark, an estimated 2 million Americans carry one copy of the sickle cell gene and can lead normal lives. In sickle cell disease, caused when two copies of the gene are inherited, red blood cells become hard and sticky and are C-shaped like a "sickle," according to the Centers for Disease Control and Prevention.
Sickle cells die early, which causes a constant shortage of red blood cells. Also, as they travel through small blood vessels, they get stuck and clog the blood flow, causing pain and other serious problems such as infection, acute chest syndrome and stroke. At risk are those of African, Hispanic, Greek, Italian, Middle Eastern and South Asian descent.
The median age of death for men with sickle cell disease is 42 and for women is 48, Dr. Gladwin noted.
The initiative's ultimate goal, Mr. Clark said, is simple -- find a cure. "I'm extremely excited to get this thing going this week," Mr. Clark said at the news conference in the Steelers training facility on the South Side, "to try to put smiles on the faces of those who have learned to smile through pain."
One of them, Darryl Watkins, 36, a clinical database consultant from Harrisburg, said afterward he deals with pain daily. "Most of mine is in my lower back, my chest, knees, heels," said Mr. Watkins, whose sister died of the disease at 17 when he was 12.
Kyriako Damavoletes, 35, of McMurray has needed a cane since he was 15 and in the last five years has faced daily pain crises. That's why, he said, Mr. Clark's help is crucial. "Definitely having someone like him promote awareness is really going to help," he said.
"I'm overwhelmed with excitement," Mr. Watkins said. "The fact that Ryan Clark of the Pittsburgh Steelers has stepped out there, and knowing the size of the Steelers Nation and the amount of people he can reach and the platform he has created to get awareness out there is everything we can ask for short of a cure."