Pulling together to overcome sickle cell disease

Posted June 12th, 2017 by Be The Match and filed in Patient Stories
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In January 2016, Desiree became the first adult at the Kansas City Cancer Center to be treated with a bone marrow transplant as a cure for sickle cell disease.

Desiree, transplant recipient

While Desiree was anxious, the timing of her transplant was critical – if her treatment was delayed, she was facing severe and irreversible lung damage that would have made her transplant even riskier.

Despite her nerves, Desiree said her support system got her through the time in the hospital.

“I don’t like being away from home, so it was hard spending all that time away,” she said. “Thankfully, my mother, sister and grandparents were with me the whole time. They put my needs before their own and made sure I had things from home to comfort me.”

Although her family was with her throughout her transplant journey, Desiree’s recovery was difficult due to a complication from sickle cell.

An earlier sickle cell pain crisis had left her with avascular necrosis in her right hip and barely able to walk. This condition occurs when bone tissue dies from lack of blood supply. Her doctors had her get out of bed and walk each day to regain her strength.

Now that she is healthy, Desiree said she is focused on helping raise awareness for sickle cell disease.

“We could cure others of the disease and find more perfect matches if more minorities were bone marrow donors,” she said. “Now I can go more places and do more things without having to worry about pain or being admitted to the hospital. I’ve missed out on doing and enjoying a lot but, my health is a lot better and continues to improve. I’m very optimistic about my future.”

A bone marrow transplant is the only known cure for SCD. Join the registry and be someone’s cure!

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