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.
Just like that, 2020 is over. What a year! I do not think 2020 turned out as expected or planned for anybody at all. When the year started, I had really low expectations. I did not expect a pandemic, but I also did not start the year with a list…
Here’s a little fun fact about me: Christmas is my second favorite time of year after August, which I like because it’s one of the hottest months here in the U.K. It’s also my birthday month, and the month that Notting Hill Carnival is held. With this festive period…
Iron overload is a side effect that some sickle cell patients suffer from as a result of blood transfusion programs being used as long-term treatment plans. Back in September, I wrote about trying a new medication to address my iron overload problem. For the past two years,…
Recently, I was playing a question-and-answer game with my partner, and one question that came up was, “What message would you like to tell your younger self?” My answer essentially was about prioritizing and measuring my life by the important things. In my younger years, I had a life plan,…
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…
Get regular updates to your inbox.