Episode
Living with Sickle Cell Disease: Turning Pain into Advocacy
- Podcast
- All Access DNA
- Published
- Feb 24, 2026
- Duration seconds
- 2940
- Processing state
not_requested- Canonical source
- https://allaccessdna.podbean.com/e/sickle_cell_pain_health/
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Summary
Chronic pain, invisible illness, Black health. In this conversation, Wunmi Bakare shares her profound journey living with sickle cell disease, detailing the challenges and triumphs she faced from childhood through adulthood. She discusses her experience with a stem cell transplant, the impact it had on her life, and the ongoing challenges she navigates post-transplant. Wunmi emphasizes the importance of patient advocacy, the need for compassionate healthcare, and the creation of Sickle Cell Prodigy, an organization aimed at supporting individuals with sickle cell disease and their families. The conversation highlights the resilience of patients and the importance of community support in managing chronic illnesses. Key Takeaways: Living with sickle cell involves navigating stigma and misunderstanding. A stem cell transplant can significantly change a patient's life. Post-transplant, patients still face challenges and pain management. Advocacy is crucial for patients with invisible illnesses. Compassionate care from providers can improve patient experiences. Sickle Cell Prodigy aims to support patients and caregivers alike including Pre=Therapy Warriors and Post-Therapy Survivors. Wunmi Bakare is a multicultural citizen and pioneering advocate in the sickle cell and rare disease community, known for her commitment to inclusion and stigma eradication. With a fervent dedication to advancing awareness and understanding, Bakare leverages both proactive and reactive media engagement to transform perceptions of sickle cell disease. Her lived experience fuels her advocacy and informs her leadership roles on the advisory boards for the National Health, Lung & Blood Institute, the American Board of Medical Specialties, Beam Therapeutics, Vertex Pharmaceuticals, Pfizer, Fulcru…