Organization continues fight against sickle cell anemia - KXXV Central Texas News Now

Organization continues fight against sickle cell anemia


Central Texas Sickle Cell Anemia Association opened its doors to help people in the community battle the disease, and even though their founder recently passed, the organization plans to continue their legacy of helping the community heal.

Sickle cell anemia is a blood disorder in which blood cells that should be doughnut-shaped are shaped like a sickle. According to the Center for Disease Control (CDC), the disorder can lead to pain or death. 

The disease is commonly found in African-American communities, because 1 out of every 365 black people are born with sickle cell. It is also found in people who are from parts of the world where malaria is common.

Eleanor Sims with the Central Texas Sickle Cell Anemia Association said Reverend Gene Carter started the nonprofit because there was not any local help for people battling the disease.

"Thirty-three and a half years ago there was a need, and he learned that people had to travel to Dallas, to Ft. Worth, to San Antonio and to Houston...he started the Sickle Cell Anemia Association because there was a need," she said. "It's important that the African-American or the black community knows that it is something we should be concerned about.

Sims said that even though Reverend Carter passed back in November, the nonprofit will press on with the work they are doing in Central Texas. 

"Rev. Carter used to say, 'if everyone would help someone then a lot more would get done'... we all agreed many years ago that we would continue the work that he started because it is important," Sims said. "Until a permanent cure is found -- there's going to be a need to take care of those individuals and their families who have sickle cell disease."

Tasha Bell was diagnosed with sickle cell when she was six-months-old. She said living with the disorder can be a living nightmare at times.

"People don't realize that it's very painful... the pain is kind of hard to describe because it's like the worst pain that you could ever feel," Bell said. "Sometimes I'm hospitalized for a week or two at a time... I've been trough a lot I've been through a lot."

She said having the Central Texas Sickle Cell Anemia Association has been a blessing for her.

"Before I got into this association, I didn't know anybody here with sickle cell... when I came into the association, I found a lot of people here that have sickle cell," Bell said. "I just like it because I found a lot of people that share the same problem that I have."

Sims said that it is important for individuals to know whether or not they have sickle cell, or a trait of the disease, because it can get passed on to children. The Central Texas Sickle Cell Anemia Association offers both screenings, and genetic counseling. 

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