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 recently shared my thoughts here on why accepting the reality and implications of a sickle cell diagnosis is essential for both patients and their loved ones. One element of my support system is a virtual group of sickle cell patients. We all aim to share knowledge and…
I recently shared my journey to accept my diagnosis of sickle cell disease. When people are told they have an illness, it not only affects them, but those around them as well. It’s therefore not just patients who have to accept the journey ahead, but their loved ones, too.
My last column about my medication compliance triggered an interesting conversation with my sister. I’d written about what I did to reach 100% compliance, which is great and necessary for someone who, like me, has sickle cell disease. But the column didn’t touch on how I traveled that…
Back in 2020, I shared details of my medication regimen at the time to treat my sickle cell disease. Since then, I’ve had a few changes in my health status. Thankfully, I successfully overcame my battle with iron overload, a serious side effect of sickle cell…
I can’t think of one area of my life that isn’t affected by sickle cell disease — a reality that can easily become overwhelming and emotionally draining. That’s why a strong support system is imperative. A support system refers to a network of people who are active and present…
Would you believe me if I told you that I was once hospitalized with a sickle cell crisis, and a reflexology foot massage is what caused the pain to subside? Probably not, right? I know it sounds rather strange. I’d been given all sorts of medications that were supposed…
Recently, for the first time I can remember, sickle cell disease has been in mainstream media quite a bit. Because much of the discourse has focused on treatments and curative therapies, I’ve been reflecting on what I can do to help drive progress in these areas. In…
Last week, I shared that I’m conflicted about joining clinical trials that test potential treatments for sickle cell disease. Although I don’t yet trust the healthcare system enough to participate, there are other ways I can make a difference. Medical progress may involve new treatments or even cures,…
A few weeks ago, I attended a sickle cell awareness event for pharmacists. I was simply there as an interested sickle cell disease patient; I don’t work in the pharmaceutical industry. One major topic of discussion was the lack of progress toward cures for sickle cell disease.
When you hear the word “accessibility,” what thought springs to mind? For me, accessibility is about making adjustments so people with individualized needs can experience a building, activity, document, or other part of life just as anyone else can. But as a disability rights advocate and a disabled person myself,…
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