- April 1, 2020
Chris Abdullahi is the founder of The Sound of Sickle, a non-profit organization that raises awareness of sickle cell diseases (SCD) and blood donations in the UK. He has spoken about sickle cell awareness on various platforms, including Google, Facebook, Guys and St. Thomas’ Hospital, and the BBC, and works closely with the NHS Blood Donations team to curate events and sign up new black blood donors. He also lives with hemoglobin SS disease, the most common and severe type of sickle cell — which means he inherited copies of the hemoglobin S gene from both of his parents. In this interview, he sat down with Lauren shortly after coming out of a ‘crisis’, which is the term used to describe the bouts of intense pain that those living with SCD can often experience. They discuss the importance of raising awareness of SCD outside the community, what living with SCD means to him, and how he manages his symptoms on a daily basis.
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Tune in as Chris shares…
- what SCD is
- that he was diagnosed with SCD when he was a toddler
- that while SCD is prevalent in Afro-Caribbean communities, there are also instances of it occurring in Hispanic & Asian communities, as well as rare cases in white communities
- that the biggest challenge in treating SCD is in getting blood donations
- how a crisis can manifest in SCD patients — that pain usually ensues when clots are present, caused by sickled blood cells
- what crisis triggers can look like
- that many SCD patients get regular blood transfusions as a preventive measure to avoid crisis
- that SCD is a lifelong chronic condition — patients cannot “grow out of it”
- that he didn’t meet many other SCD patients until he was in his 20s
- the mental health side of managing chronic illness like SCD
- the cultural side of managing chronic illness like SCD
- why he holds back from revealing his condition at work, and how he manages symptoms with his work schedule
- that sickle cell diseases have just been classified as a disability in the UK
- about his work in creating The Sound of Sickle
- that in the UK, black blood donors make up only 3% of the donation base
- why he won’t use stem cell treatments to cure his SCD
- why his friends are so important to his health
- his parting words: “Donate blood!”
This episode is sponsored by Embr Labs, creators of the Embr Wave.
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