The Selma Times Journal

Steve Ray was diagnosed with sickle cell anemia as an infant.

He was ashamed of the disease growing up and throughout his school years, Ray kept his condition a well-guarded secret.

“I would sit out of school for a week or so and I’d come back and people would ask what’s wrong with me and I would make up something,” he said.

Now Ray, 32, isn’t ashamed anymore.

For over10 years Ray has volunteered for the Tri-County Southwest Alabama Sickle Cell Anemia Association. He said does a great deal of paperwork for the organization, but Ray also helps administer tests for sickle cell and educates the community about the disease.

“A lot of them look at me and say you don’t look like nothing’s wrong with you,” Ray said. “And I tell them you need to come to the hospital with me.”

Ray said it’s “very important” for the community to be aware sickle cell anemia.

The disease is an inherited blood disorder that attacks red blood cells. The red blood cells become sickle-shaped or crescent-shaped and have difficulty passing through small blood vessels, affecting tissues, organs and tendons. When this happens, persons with sickle cell anemia experience excruciating pain.

“Imagine stubbing your toe and that pain being 10 to 15 times worse all over your body,” Ray said.

In the U.S. it is estimated that over 70,000 people have sickle cell disease and about 1,000 infants are born with the disease each year according to the Sickle Cell Disease Association of America.

Sickle cell mostly affects people of African descent, but it is also present in Portuguese, Spanish, French Corsicans, Sardinians, Sicilians, mainland Italians, Greeks, Turks and Cypriots. There is no universal cure for the disease, but researchers are looking into gene therapy for a solution.

Ray has underwent three hip replacements surgeries because of the disease, but continues to be an optimist in life.

“It takes a lot out of your life,” he said. “I try to have a positive outlook on life because if I didn’t it would get the best of me. I’m determined not to let it keep me down. I try to give it my all.”

In addition to volunteering at the Sickle Cell Anemia Association, Ray also volunteers at the Selma Disabilities Advocacy Program. He said both of his volunteer duties provide him an opportunity to “get out the house and do something.”

Instead of holding their heads down, Ray tells young people with sickle cell anemia today to hold their heads high and to not let the disease get the best of them.

“I just tell them it’s nothing to be ashamed of and it’s nothing they did to get the disease, they were just born that way,” he said. “I just tell them to pray and keep their heads up and stay encouraged.”