The Science Gap is committed to amplifying the voice of individuals living with sickle cell disease (SCD).
Abi Osei-Mensah and Nicole Adesanya - both diagnosed with SCD - shared their stories. These testimonials aren’t just personal accounts; they are a call to action. Through their voices, we can begin to understand the urgent need for change.
Could you share a little about your journey and daily life living with sickle cell?
Abi: Daily life with sickle cell isn’t easy. I feel anxious a lot of the time, anticipating when my next crisis may arise. My journey hasn’t been easy at all - I’ve had 2 strokes and countless admissions.
Nicole: My journey with sickle cell had a rocky start. I did not understand the severity of sickle cell until I could no longer run as fast as my peers at primary school. I was bullied for my jaundice and even the way I breathed. My crises became more frequent when I started pharmacy school. By my third year, I’d had enough of sickle cell having a chokehold on me, so I embarked on a journey of taking my health seriously. Six years later, I thank my younger self.
Do you feel that the healthcare system understands the challenges Black sickle cell patients face?
Abi: The healthcare system doesn’t understand at all. Because it’s a hidden disability, they don’t see us or our pain, and they struggle to sympathise with us. The place that’s supposed to help us tends to further traumatise us.
Nicole: No. Every day, we see clips of SC patients experiencing maltreatment or being denied treatment. This doesn’t include my own past experiences or the countless cases that do not get posted online. It’s a shame that despite all our cries, we are still not being seen.
How can the community and healthcare system better support sickle cell patients?
Abi: The community can help by donating blood, so many of us are reliant on blood transfusions to keep us alive and healthy. The healthcare system can do better by listening to us. A lot of the time, the patient can tell you exactly what would help them.
Nicole: To listen. To be educated. The lack of education and sympathy for SC patients is why we struggle. I believe that greater understanding from healthcare professionals, along with the voices of those who suffer from the condition, including myself, can make an impact and drive change.
If you could send one message to someone newly diagnosed, what would it be?
Abi: Sickle cell isn’t a death sentence! You can still do and achieve so much. When you’re unwell, take the time to rest and recoup, but once you feel stronger, do what your heart desires!
Nicole: Prioritise yourself. Invest in all aspects of your life—your health, relationships, education, work, and more. Sickle cell affects everything. However, when you invest in improving your quality of life, managing Sickle cell becomes easier.
Many Black people in the UK carry the sickle cell trait. If both parents are carriers of the trait, there is a 25% chance their child will inherit sickle cell disease.
Request a blood test from your local GP.
Donate blood to support SCD patients who need regular transfusions
Follow Abi and Nicole on their socials:
https://www.instagram.com/byabs_
https://www.tiktok.com/@oncohaem.rx
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