Shownotes Transcript
A native of Nigeria, Ade Adeyokunnu emigrated with his family as a child and grew up in Maryland. Currently living in the Philadelphia area (and a newlywed!), he’s been passionate about sickle cell disease advocacy for as long as he can remember — perhaps because both he and his younger sister, Bukky, both live with the diagnosis. It’s what drove him to create SikCell, the first online community for people living with sickle cell disease, in 2009. When living with what can feel like an isolating and often-misunderstood chronic condition, Ade firmly believes that building a support network of people who understand what you’re going through is crucial to long-term quality of life.
Tune in as Ade shares:
- that testing for sickle cell among infants was limited in Nigeria when he was growing up there
- how being the child of immigrants has influenced his healthcare experience
- the impact of religion on his upbringing — and how it intersected with perceptions of his diagnosis
- that sickle cell is often stigmatized in African cultures
- that he didn’t start advocating for himself until he was in grad school
- that on average, he is hospitalized in crisis 2-3 times per year
- that he has often faced racism in the ER — which, of course, has only exacerbated stress and pain
- that it was a blessing in disguise to grow up with a sister who understood his disease experience
- that bone marrow transplant is currently the only viable cure for sickle cell
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