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.
In a previous column, I spoke about some of the things that trigger a sickle cell crisis. This week, I want to share some pointers on how I try to address a crisis in its early stages while at home. Electric blanket I have a heated electric…
A sickle cell crisis is one of the main symptoms sickle cell patients face. However, just because we all experience the same symptoms, or similar ones, it doesn’t mean the condition affects everyone equally. As I meet more sickle cell patients, I’m further convinced that the condition affects each…
Iron overload is a common side effect for sickle cell patients participating in blood transfusion programs. When this happens, the body’s excessive iron levels can cause an accumulation of iron in the body’s organs, which can lead to serious organ damage. I was diagnosed with iron overload…
I turned 31 on Aug. 20, 2020. That’s 31 years as a sickle cell patient, and what a journey it has been so far! As sickle cell patients, we are often exposed to all sorts of negative comments and stigmas surrounding the condition. So, I want to use my…
Have you ever informed somebody of your diagnosis and found their response to be a little annoying? I often have. I try to extend grace in such situations because usually people don’t know what to say and, as such, speak without considering the ramifications. With that in mind, here are…
Living in lockdown the past few months has been quite an experience. If you had asked me before the pandemic if I could stay indoors for 12 weeks and go out only for hospital appointments, I would have told you it was impossible. But here I am, well…
Whenever I meet new people and tell them I have sickle cell disease (and explain what it is), they often ask how they can help. June 19 is World Sickle Cell Awareness Day, so I thought it appropriate to discuss ways that you can help the sickle cell community,…
I recently was admitted to the hospital during a sickle cell crisis and because of suspected COVID-19. My experience was harrowing. I have experienced many things as a sickle cell disease patient. I have had pneumonia more frequently than I can remember, suffered collapsed lungs, had deep vein…
Living with sickle cell disease, I rely on several medications and treatments for various situations. In general, I take medications for my own well-being, as research shows that sickle cell patients who struggle to comply with medication regimens tend to experience a lower quality of life. Ergo, to have…
“Survival of the fittest” is a phrase I have come to loathe. This manner of thinking is particularly appalling to hear as a sickle cell patient. I have heard the phrase more frequently lately, against the backdrop of the current COVID-19 pandemic. But what does it mean? Historically,…
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