Courtney shares what it’s like living with sickle cell disease
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Courtney shares what it’s like living with sickle cell disease
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Sickle cell disease is an inherited disorder that affects about 100,000 people in the United States, predominantly African Americans. The disease affects red blood cells. Normally, they're round and plump. Sickle cell disease warps them into crescent shapes. That makes them less flexible and less able to carry oxygen to internal organs. A person with sickle cell disease faces a lifetime of potential health complications like heart disease, kidney disease, stroke, and frequent bouts of intense pain.
In this conversation, Courtney talks about the care and education about sickle cell disease she received as a patient at St. Jude Children’s Research Hospital. She says it’s important to find community, to have a strong base of support, and to know how to advocate for yourself.
Courtney was one of the very first babies at St. Jude to be part of a study called BABYHUG. It helped pave the way for a medication called hydroxyurea to be approved for young children with sickle cell disease. She has high hopes for more innovations in treatment in the future.
St. Jude is the primary treatment center for children with sickle cell disease in the Memphis area, and it is also one of the largest sickle cell disease programs in the country. In 1983, a St. Jude patient was the first person to be cured of sickle cell disease through a bone marrow transplant. Today, in addition to participating in and leading several clinical trials studying the use of hydroxyurea in children, St. Jude is also studying gene therapy as a potential cure for sickle cell disease as well as techniques to make stem cell transplantation less risky and more broadly accessible.
You can find more information about research into sickle cell disease and the patients and families who find care at St. Jude here
https://www.stjude.org/get-involved/other-ways/sickle-cell-awareness-month.html#impact
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