The treatment Adakveo (crizanlizumab) has been made available in the U.K. as the first new therapy for sickle cell disease in over two decades. The aim of Adakveo, which will be available to patients 16 and older in England and Wales, is to reduce the number of sickle…
The pain from a sickle cell crisis is one of the most devastating things I have felt. It is unpredictable and can eat away at you physically, spiritually, and mentally. The normal response to severe pain is to cure it or ease it, which usually involves taking some type…
I was recently diagnosed with avascular necrosis (AVN) in my knees. When the doctor called to tell me, I expected to be OK with it. I had read fellow Sickle Cell Disease News columnist Tito Oye’s column about AVN, felt similar symptoms, and conducted further research. I tend…
I often underestimate how much I have learned about sickle cell over the years. To live with a chronic condition, one must understand all the symptoms and side effects that come with it. However, these lessons aren’t freely given — there isn’t a handbook for living with sickle cell. I…
September always reminds me of preparing for a new school year. It’s been a while since I’ve had to do that, so I have long since fallen out of the habit. However, I have not forgotten the feeling of new stationary or shopping for things to take to college. One…
As August draws to a close, so does the end of summer. September brings a new season and a fresh start. It is also Sickle Cell Awareness Month — a time to get involved and spread knowledge about sickle cell disease. But as someone with the condition, I’m exposed…
The word “crisis” is probably the most accurate term for what happens when pain kicks in from sickle cell disease. The dictionary definition of a crisis is “a time of intense difficulty or danger,” and that’s exactly what happens during a sickle cell crisis. When I have one, it…
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…
“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…
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.
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