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 am scheduled to have a blood transfusion today. So, I want to take this opportunity to explain how I prepare and what this means for me. I have previously written about my treatment and medication regimen. In that column, I explained that I underwent exchange blood transfusions…
I have not felt well recently. I have been struggling with a lot of pain from sickle cell crises. In normal circumstances, I think I would have gone to the hospital at least once in the past two weeks, based on the amount of pain I have been in.
In my last column, I shared tips about dating with sickle cell disease. Continuing in the spirit of the Valentine’s Day season, I wanted to discuss in this column tips for those of you who wish to date someone with sickle cell. I have found that this topic isn’t…
One thing people always ask me is how I navigate dating as a sickle cell patient. Since we’ve now entered the month of love, with Valentine’s Day right around the corner, what better time for me to write about dating while chronically ill? From the start, I am very open…
In a previous column, I mentioned some of the good things that happened to me last year. This included a decrease in my iron levels and my subsequent switch from Desferal (deferoxamine mesylate) subcutaneous infusion pumps to Exjade (deferasirox) tablets. This was one of my greatest highlights of…
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…
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