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.
I have a difficult time knowing when I’m not feeling well apart from when I have a severe illness. That sounds ridiculous, right? Because I have a chronic condition, someone might think I would know when I feel sick. But the irony is that a chronic condition can result in…
I recently watched a film on Netflix called “Strain,” which depicts the life of a child with sickle cell disease. The film mentions that stroke is a symptom of sickle cell, which I don’t believe is widely known. To mark Sickle Cell Awareness Month in September, I have…
When a sickle cell patient mentions a crisis, most people think of a painful, vaso-occlusive crisis. I can understand why — it’s by far one of the most common complications of sickle cell disease. However, it’s not the only complication that can occur. One day when I was…
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…
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