Mary is a 30-year-old London-based sickle cell patient using her experiences to build up others and raise awareness of what it’s like to live with a rare disease.
Today is my birthday. When I was born, the life expectancy of sickle cell patients in the U.K. was 10 years old. It was worse in Nigeria, at 5 years old, which is why my family and I remained here in the U.K. My dad had come to London to…
People often tell me that I make living with sickle cell disease look easy. It is not. Whenever people make these types of comments, I always think that because I was born this way, I don’t know any other life — not really. For the most part, I have grown…
Most COVID-19 restriction laws were lifted in England on July 19. This includes mask requirements, social distancing rules, work-from-home guidance, and the rule of six, or the maximum number of people allowed at a social gathering. July 19 has been dubbed “Freedom Day” here in the U.K., but I…
One of the many stereotypes of British people is that we can be extremely reserved. In many places in the world, it is common for people to greet one another on the street each morning. This is rare in the U.K., specifically in the southern part of the nation. If…
World Sickle Cell Day is upon us tomorrow, June 19. Following are memories that illustrate sickle cell’s ugly grip on my reality. *** The year was 2018 and the British Society for Haematology Annual Scientific Meeting booked me to speak about sickle cell pain management. I live…
One of the most annoying things about sickle cell disease is that a hospitalization can occur with very short notice. I might be fine one moment only to become severely ill the next, often without any heads-up from my body. Therefore, it is important to be prepared. Because I…
It has been a while since I last wrote. This is because unfortunately, I had another hospital admission. I was admitted in mid-April and discharged last week, so I was hospitalized for quite some time. I had a sickle cell crisis, although I’m uncertain about what caused it. I…
I want to start by stressing that I do not believe a booming career is the only parameter of success. I have previously written about what success means to me and how sickle cell disease has shaped my outlook on it. Having a successful career is a goal that…
I am scheduled to have a blood transfusion today. So, I want to take this opportunity to explain how I prepare and what this means for me. I have previously written about my treatment and medication regimen. In that column, I explained that I underwent exchange blood transfusions…
I have not felt well recently. I have been struggling with a lot of pain from sickle cell crises. In normal circumstances, I think I would have gone to the hospital at least once in the past two weeks, based on the amount of pain I have been in.
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