Steelers safety adds strength to fight against sickle-cell disease
By Jason Cato
Published: Sunday, Nov. 17, 2013, 9:00 p.m.
Ekeyma Harris cannot count the times that pain forced her into the hospital.
Dull aches swell into excruciating pangs in her abdomen, though thankfully it has been five years since she has felt painful throbbing in her limbs.
“You learn how to deal with it, but it's still difficult,” said Harris, 27, of Wilkinsburg, who is two years from completing studies to become a nurse.
She is among about 100,000 people nationwide, most of them black, with sickle-cell disease. The life-threatening genetic condition causes normally soft, doughnut-shaped red blood cells to become hardened and crescent-shaped, like sickles. Many more carry the trait that causes the disorder.
The misshaped cells stick together and block small blood vessels, starving tissue and organs of oxygen. It can cause lung and spleen damage, severe anemia, kidney failure or stroke.
Steelers safety Ryan Clark on Monday night will host the second “Cleats for a Cure” at Engine House 25 and the Roberto Clemente Museum in Lawrenceville to raise awareness and money for research at the University of Pittsburgh's Vascular Medicine Institute. Cleats worn and signed by Steelers players, and painted by Pittsburgh artists, will be auctioned with other items.
Clark carries the sickle-cell trait and lost his spleen and gallbladder, along with 40 pounds and nearly his life, after a game in 2007 in Denver. Last year, he started Ryan Clark's Cure League.
“That's what led me to want to do this, to give sickle cell a face, a voice, a champion,” said Clark, whose wife's sister died from the disease. “I want to do something every day, every month. It makes people ask questions.”
Having someone carry the banner helps, said Dr. Enrico Novelli, director of UPMC's Adult Sickle Cell Anemia Program.
“To have a high-profile spokesperson for a disease is a real advantage,” he said. “The increased awareness is a real bonanza for scientists, doctors and anyone who is a stakeholder in the disease.”
Sickle-cell anemia, the most common form of the disorder, was diagnosed in 1910, said Novelli, whose program cares for about 160 adult patients. To date, hydroxyurea is the only FDA-approved drug used to treat the disease.
“There's been no other breakthrough, in terms of drug therapy,” Novelli said. “There's a need for a lot of research.”
Some research is happening at the Vascular Medical Institute, supported by the Institute for Transfusion Medicine, Hemophilia Center of Western Pennsylvania and UPMC. About 20 scientists are working on sickle-cell projects, said Dr. Mark Gladwin, the institute's director.
Other researchers are at Children's Hospital of Pittsburgh, which treats about 300 children with sickle-cell disease.
Research in the Oakland lab includes testing on mice for a potential drug from Bayer and reviewing the effects of a preliminary medicine on blood from adults with sickle-cell disease. New drugs could be approved in two to five years, Gladwin predicted.
“Those aren't cures,” he said. “But that's OK. These new drugs are needed to reduce suffering and improve quality of life.”
Life for those with the disease is better than in the past, said Neddie Hollis, executive director of the Sickle Cell Society Inc., a Homewood-based nonprofit. Cooperation between agencies that help people with sickle-cell disease has improved, too, he said.
The Sickle Cell Society receives federal grant money through Children's Hospital and works with about 140 adults, helping with everything from employment and transportation to housing issues and mental health.
“We really cover any need they might have,” Hollis said.
Gladwin believes sickle-cell disorder lacks attention and funding largely because it is perceived as a disease affecting blacks, though it afflicts people from India, the Mediterranean and Hispanics. Cystic fibrosis, a common genetic disease among whites, receives much more attention, he said.
In the family of Andrea Williams, 46, of Beltzhoover, her two daughters carry the trait, her older son is unaffected, and her younger son was born with sickle-cell disease in 2000.
“We were devastated,” Williams said. “I had cousins who had the disease. It wreaked havoc in their lives until they succumbed to it.”
A social worker told her, “The way you deal with this disease is the way your son will deal with this disease,” Williams said.
She started the nonprofit Mt. Washington-based Children's Sickle Cell Foundation Inc. in 2002, which helps about 250 families and adds families each year.
“We want a cure for our kids. They are suffering,” Williams said. “... The world is going to benefit from the work being done here. This is what gives me hope.”
Jason Cato is a Trib Total Media staff writer. Reach him at 412-320-7936 or email@example.com.
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