The Patient Experience
Joao’s experience highlights the importance of individualized care plans for managing sickle cell disease. Despite undergoing a splenectomy and starting hydroxyurea, his crises persisted, requiring frequent hospitalizations. His story demonstrates the need for healthcare providers to continuously adapt treatment plans based on patient-specific needs.
Personal Accounts of FSCDR Patients:
“This facility is a place that I am very thankful for, I am grateful for Dr. Bronte & her amazing staff like Dr. Arlene, Dr. Rita, Dr. Hall, Dr. Blyden, Ms. Jhanel, Ms. Jeronica, Ms. Christine, Ms. Caroline the nurses Ms. Jamie, Ms. Paula, Ms. Patsy, Ms. Donna, Ms. Atsy, the nurse assistants Mr. Jack, Ms. Laurie & everyone else this faculty is like a big family that shows love, respect & tough family love when it is needed.”
– Devonte T.
Supporting Data: Hydroxyurea has been shown to reduce hospitalizations and pain crises in sickle cell disease patients, but its effectiveness varies, underscoring the importance of personalized care.
Myth vs. Fact
Myth: Gene therapy for sickle cell disease is science fiction and not available to patients.
Fact: Gene therapy is now a reality for sickle cell disease patients. The FDA approved the first gene therapies, Casgevy and Lyfgenia, in 2023, using CRISPR-based genome editing to modify patients’ own stem cells and prevent sickling
Resource: FDA Approves First Gene Therapies