By Lisa Zimmerman | Engagement Insider
Ryan Clark always knew he carried the trait for sickle cell anemia, a genetic blood disorder. However, he never imagined it would affect him in the dramatic way that it did. The former NFL safety was signed as an undrafted free agent by the New York Giants in 2002 and went on to have a 13-year, Pro Bowl career. In addition to playing for the Washington Redskins, he spent eight years with the Pittsburgh Steelers, including as a member of their Super Bowl XLIII championship team.
However, in 2007, during a game in Denver, Clark experienced excruciating pain in his left side. He was rushed to the hospital where he was diagnosed with a spleen problem that turned out to be directly related to his sickle cell trait and which had been triggered by the high altitude. He ultimately had surgery to remove both his spleen and gall bladder, but was deactivated for all future games that were played in Denver.
“It was really scary,” Clark recalled. “I had never been through anything like that. I didn’t know the severity. But then I kept getting sicker. I kept losing weight and I would get up in the night with fevers of 104 degrees. It was tough to deal with and it was tough on my family. It made me understand what people with sickle cell go through every day.”
After losing 30 pounds, Clark eventually regained his health and his strength and continued with his football career, returning to the Steelers in 2008. But, Clark knew this was a cause he needed to take on and he launched Ryan Clark’s Cure League. His own experience wasn’t the first time he had been confronted with the severity of the disease. His best friend, whom he considers his brother, lost his wife to sickle cell anemia in 2009 - just one year after they were married.
Clark’s case was unusual as normally just having the sickle cell trait doesn’t cause physical issues. The disease can only become fully developed if a person inherits the trait from both parents, which can result in sickle cell anemia. One of the biggest challenges of sickle cell anemia is the constant pain it causes. Although many people can live productive lives, in some cases, the pain can be so debilitating that working and regular daily activities can be at best, difficult and at worst, impossible.
For generations, sickle cell anemia did not garner a lot of attention. Primarily affecting those of African and Mediterranean descent, Clark discussed how the longtime stigma is starting to abate, but still exists and why.
“I think it has been stigmatized as a black illness, which it is predominately,” he said. “But, when I went and talked to people who had sickle cell, some were Mediterranean, they were Greek. That’s why we don’t talk about it because in the black community you don’t want to have another thing hanging over you, but until you have that type of dialogue, no one knows [how to address it.]”
In addition, because the main symptom is pain, sickle cell patients often require ongoing pain medication, which in itself, can have a negative connotation.
“The hardest part is, even in the medical community, people don’t fully understand it,” Clark said. “[Sickle cell patients) are treated like druggies because they need pain pills, but there’s [no illness or injury] you can see. When you’re trying to describe how much pain you’re in, people don’t believe you so you’re not taken care of in the proper way.”
Through his foundation and personal efforts, Clark is working to bring attention to, and awareness about, sickle cell anemia on many levels. In addition to speaking to groups to educate them, he is working to raise money to build a facility in Pittsburgh where the sole focus will be research to find better treatments and, ultimately, a cure. To date, two million dollars has been raised.
In recent years, Clark has seen an increase in attention and understanding of the disease, which reinforces his commitment to the cause. “The good thing is people are living longer and being a lot more productive,” he said. “People are starting to understand sickle cell a little bit more. People have gained the knowledge to know how to take care of themselves.”
Clark acknowledged his gratitude for the people around him who have become part of his team. His foundation is run by his friend, attorney, Steve Tanzilli, and they work with Dr. Mark Gladwin a Pittsburgh physician who is already conducting sickle cell research.
Clark is also focused on increasing government attention and assistance. When he played in Washington he spent time on Capitol Hill speaking with key influencers and decision makers and hopes to intensify those efforts. In addition, he is looking to expand the reach of the Cure League, which currently focuses much of its attention in the Pittsburgh area, so that it can have a national impact.
There will always be a personal aspect to his fight. Clark and his wife, Yonka, have three children, the youngest of whom, like Clark, has the sickle cell trait. Although only 10 years old, the Clarks are already educating her and her siblings on what the disease is all about and its ramifications.
For now Clark is excited about the work being done and the possibilities that exist once the Pittsburgh research facility is up and running. But he knows that in addition to raising awareness, people everywhere need help and guidance and he is eager for the doors to open and start effecting change.
“People need to know that when this research center is up and running it’s a place you can go for help.”
And Clark’s goal above all else? “We want to find a cure.”
For more information about Ryan Clark’s Cure League: www.cureleague.org.