Death always is a sobering thing to process. Hearing about someone’s untimely passing — whether the person was close to us or not — reminds us of life’s fickle nature. We recently heard the sad news of actor Chadwick Boseman’s passing at the age of 43. Boseman…
Her Sickled Journey – a Column by Tito Oye
Looking at my diagnosis in a positive light doesn’t come naturally to me. I usually view my health as a disadvantage, and I used to expect others to do the same. I think this expectation stemmed from the many times I was unable to do something well or…
In the U.K., the National Health Service maintains a medical exemption list with conditions that entitle patients to free prescriptions. This is a wonderful concept that relieves some of the financial pressures of healthcare costs that many people might otherwise face. Without this vital service, people would…
Rolling With the Punches
Life can change so unexpectedly, especially when dealing with the unpredictability of sickle cell. Sometimes we have to warm up to the idea of rolling with the punches. What does it mean to roll with the punches? In fighting, rolling with the punches refers to how…
In the U.K., approximately 15,000 people have sickle cell disorder and approximately 240,000 have the sickle cell trait. Despite these high numbers, I only meet someone who knows about sickle cell once in a blue moon. One time I met a guy with sickle cell at my friend’s church. Speaking…
During this period I have heard a lot of people complain about unwanted weight gain, but it is the opposite in my case. I have been losing a lot of weight and it took me a while to notice. When I think about all the possible explanations,…
I recently spoke to a mother who gave birth to a child with sickle cell. The diagnosis was not expected at all. The news completely rocked her world. That’s understandable, as sickle cell results in huge lifestyle changes that a parent needs to accommodate. I imagine it is…
The internet has been a blessing in many of our lives. It is an extremely handy tool, and a quick Google search can turn any of us into a mechanic, a Michelin chef, or a gardener. However, the internet can be a scary place when it comes to researching…
We recently experienced a heat wave here in the U.K., where temperatures climbed as high as 32 C (89.6 F). Those of you from hotter parts of the world may look at this laugh, but the U.K. is not built for this type of heat. Homes, made of brick,…
It has started … the period I have been uncertain about. Restrictions are starting to ease. I have been shielding for over three months, during which my employer placed me on the furlough scheme. Many people across the country are in a similar scenario during this lockdown.
Recent Posts
- New reimbursement deal in Germany expands access to Casgevy for SCD
- New York study finds regional gaps in sickle cell disease hospitalizations
- When a sickle cell pain crisis interrupts a stretch of good health, part 1
- Scientists discover how stressed red blood cells make hemoglobin
- How my sickle cell disease advocacy has evolved over time
- New study links sickle cell anemia to lower ovarian reserve in women
- $3M Breakthrough Prize honors duo whose work changed SCD treatment
- Etavopivat Phase 3 results support potential approval in sickle cell disease
- New diagnoses result in new grief and a new relationship with my body
- Study finds lower treatment use among SCD patients in sub-Saharan Africa