Living Fully with Sickle Cell Disease
She is a 17-year-old African-American female born with sickle cell beta plus thalassemia. Through no fault of her own, she is genetically marked for life. Over her lifetime she has had several admissions for infections, three blood transfusions, and two episodes of acute chest. Pain due to vaso-occlusive episodes (VOE) is usually managed at home. The miracle of hydroxyurea, started at age 12, improved her symptoms significantly. Nearly 5 years pass with stable labs and no pain episodes. Almost forgetting that she has the disease, she is living a seemingly “normal” teenage life. She is an excellent student with a loving family and good friends. She enjoys playing the piano, listening to music, theater, and participated in high school gymnastics. Her disease is described as mild and ibuprofen is the pain medication she typically needs.
Out of the blue, a few weeks before her 17th birthday, she has a pain episode, while relaxing at home with none of the expected triggers....
KEY WORDSchronic disease disparities disease management self-management vulnerable populations
Compliance with Ethical Standards
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