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 been experiencing a lot of pain lately due to sickle cell crises. I previously wrote that my crises have started to correlate with my menstrual cycle, but I’m now experiencing them daily. Admittedly, I’m not experiencing the worst pain ever, as I’ve been able to manage…
Winter has finally arrived here in the U.K. I really dislike the winter, in case you didn’t know. One of my biggest sickle cell disease crisis triggers is cold weather. Although sickle cell patients have different pain crisis triggers, almost all sickle cell patients are triggered by cold…
Last Monday, I awoke to a flurry of comments about the results of a landmark sickle cell inquiry here in the U.K. that uncovered evidence of racism in sickle cell patient care in the the public healthcare system. The report by the All-Party Parliamentary Group on Sickle Cell and…
I wrote about feeling unwell without any apparent cause in September, and then again last month. So, guess what? I was recently sick again. But in my quest for silver linings, I should stress that I think I have finally identified the cause: my period. The U.K.’s National…
I was unwell for a week in August. It began with deep lethargy. After about two days of that, the vomiting started. Everything made me vomit: brushing my teeth, drinking water, nibbling food. I went into the hospital after about four days because I was sure I was experiencing…
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…
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