A Guided Treatment Navigation Platform for Sickle Cell Disease
In partnership with St Jude Children's Research Hospital
Now Available in English and Spanish
If you are considering treatment options for sickle cell disease, MySCDStory.org can help you and your family think through your options. The site is designed for pediatric patients under 18 and is now available in both English and Spanish, making this resource more accessible to Spanish-speaking patients and families.
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MySCDStory.org was created under the medical direction of Dr. Akshay Sharma and Dr. Liza Johnson at St. Jude Children’s Research Hospital.
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The site uses a fictional character, Nia, to walk patients and families through different sickle cell treatment options—including medication, chronic transfusion therapy, bone marrow transplant, and gene therapy—so visitors can better understand what each choice involves and how it might fit into a real-life journey.
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With the addition of Spanish-language access, more families can explore these treatment options in the language they are most comfortable using when learning about their care.
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*This resource is designed to support conversations with your care team, not replace medical advice.
What Our Community Says
"There is so much information to process when you’re learning about treatment options for sickle cell disease. MySCDStory gives patients a place to start. Our patients can explore the different options at their own pace. As a Founder, it helps me feel more prepared to have conversations with the families we serve."
Wunmi Bakare
Co-Founder, Sickle Cell Prodigy
Benefits & Risks
Want to compare treatment options? MySCDStory breaks down the possible benefits and risks of major sickle cell disease treatments—such as bone marrow transplant, gene therapy, chronic transfusions, and Hydroxyurea—so patients and families can understand how each option might affect health and daily life.
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MySCDStory.org is an educational website created under the medical direction of specialists at St. Jude Children’s Research Hospital. To learn more about St. Jude's BMT, Cell and Gene Therapy Program.