Sickle cell disease is considered a rare condition. In the U.K., where I live, an estimated 15,000 people have it. In a population of over 66 million, it’s safe to say that my chances of meeting other people with sickle cell are extremely low. As a child, not many…
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I have often overlooked the song “From Now On” from the movie “The Greatest Showman,” because “This Is Me” has to be the best song on the soundtrack, right? In the movie, protagonist P. T. Barnum, played by Hugh Jackman, feels as though everything is lost, until…
Having sickle cell disease or other chronic conditions means having to overcome many hurdles. For example, receiving bad news about our health can cause us to be sad. While it’s impossible to be positive all of the time, we still must do what we can to have a positive…
“You’ll Never Walk Alone” is a famous ballad sung by fans of the Liverpool Football Club. As a Manchester United fan, I hate Liverpool, but I love this anthem. Is that allowed? It reminds me that in soccer and life, you can’t do things alone. Yes, there are always…
People often tell me that I make living with sickle cell disease look easy. It is not. Whenever people make these types of comments, I always think that because I was born this way, I don’t know any other life — not really. For the most part, I have grown…
The Summer Olympics in Tokyo are in full swing, and even with the multiple hurdles that COVID-19 has created, I am happy the games are taking place. I’m not hugely into sports like many people are, but whenever a large event like the Olympics or the World Cup is…
Ah, here we go again. I should have known. If I drank more water, if I wore a hat, if I didn’t walk up all those stairs, if I didn’t eat so much, if I didn’t stress, if I didn’t have so much fun, I wouldn’t have had a crisis.
I can’t put into words how gut-wrenching it was to receive my son’s sickle cell diagnosis. I had prayed fervently that he would be sickle-free, but alas, God had other plans. At least, that’s what my family and every other religious person told me. But did God really have…
Last week, I did something I never thought I would do. It’s something that people with sickle cell disease are strongly advised against doing. But it also has redefined my abilities and defied the limitations I once imposed on myself. My friends and I took part in a 10-mile…
It’s summertime, my favorite season here in the U.K. Summer brings great music, good vibes, and no crises! Sigh, I wish. I love summer weather because one of my main triggers for a sickle cell crisis is the cold. Unfortunately, in the U.K., summer isn’t consistent in terms of…
Recent Posts
- New reimbursement deal in Germany expands access to Casgevy for SCD
- New York study finds regional gaps in sickle cell disease hospitalizations
- When a sickle cell pain crisis interrupts a stretch of good health, part 1
- Scientists discover how stressed red blood cells make hemoglobin
- How my sickle cell disease advocacy has evolved over time
- New study links sickle cell anemia to lower ovarian reserve in women
- $3M Breakthrough Prize honors duo whose work changed SCD treatment
- Etavopivat Phase 3 results support potential approval in sickle cell disease
- New diagnoses result in new grief and a new relationship with my body
- Study finds lower treatment use among SCD patients in sub-Saharan Africa