In this powerful episode Rome interviews Wumi Bakare and Christelle Salomon, two amazing women who are sickle cell warriors and hosts of the Through the Genes podcast. September is Sickle Cell Awareness Month. Wumi and Christelle share their personal stories of living with sickle cell disease and how they became advocates for new treatments in precision medicine like stem cell transplants and gene editing.
The podcasters discuss the importance of finding community-based organizations (CBOs) to connect with knowledgeable doctors, research treatment options and feel supported. They also talk about the importance of sickle cell warriors to have access to the right information so they can make informed decisions about their care. They dive into the unique challenges that sickle cell patients face, including racism in healthcare and unequal access to new treatments.
Some of the valuable takeaways include:
- Be Open to New Possibilities: Don’t immediately dismiss new sickle cell treatments or clinical trials without first learning about them. Understand what you want out of life and see how these options might help you achieve it. Keep an open mind and consider all possibilities.
- Ask, Ask, and Ask Again: Don’t hesitate to ask your providers questions about your condition and treatment options. If you don’t understand something, ask them to explain it again. Be courageous and ask to seek answers until you feel comfortable and informed.
- Do Your Homework (But Wisely): Research your condition and treatment options from trusted sources. Look for information from reputable organizations, medical professionals, and patient advocacy groups. If you’re unsure about a source, ask someone knowledgeable for their opinion. Empower yourself with credible information.
