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 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,…
I was hospitalized on March 3 with a sickle cell crisis and discharged 12 days later. I then spent a week recovering at home. Under normal circumstances, I would have returned to “ordinary life” on March 23. But during that period, ordinary life changed significantly due to the…
On March 16, 2020, United Kingdom Prime Minister Boris Johnson announced that in response to the global COVID-19 pandemic, vulnerable citizens should shield themselves for 12 weeks. My instant reaction was utter shock. How could I feasibly spend the next 12 weeks inside my house? It’s been two weeks…
If someone asked you to tell your life story, what would you say? We all have a story. Some might begin by describing their life from the point of meeting their partner, or from high school, or perhaps following the birth of their child. We remember and retell our stories…
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