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.
At the end of each year, it seems like everyone and their dog publishes a round-up on social media of all the wonderful things they experienced in the previous 12 months. It’s great, as I love hearing about the good that happens in people’s lives. Too often, we seem to…
It was the evening of Nov. 17. I’d finished work and was going about my usual evening activities when my mum called to catch up. She asked if I’d heard the news of an apparent cure for sickle cell. I hadn’t, so I asked her further questions — but…
Note: This column describes the author’s own experiences with opioids and alternative forms of pain relief. Not everyone will have the same response to treatment. Consult your doctor before starting or stopping a therapy. Unfortunately, as winter descends upon us here in the U.K., my chances of experiencing…
On Sunday, Oct. 29, daylight saving time ended here in the U.K., meaning we set our clocks back one hour. In the week leading up to this, we experienced a sudden drop in temperature. It’s still dark in the morning when I leave home, and now it’s dark again by…
It’s no secret, especially for those who read this website, that one of the main symptoms of sickle cell disease is a vaso-occlusive crisis. When I say I’m experiencing one of those, what thoughts come to mind? I encounter varied types of crisis pain at varying severities. Based…
Why does everything have to be a fight? I ask this because the past few weeks have been frustratingly difficult for me. I recently had to drive to a different county to sort something out. On the way back, I got stuck in traffic. A drive that was supposed to…
In popular culture, self-care often seems to be equated with indulgence or luxury, such as spa visits, retail therapy, or fine dining. But I believe this perception is flawed, and that buying into it does people a disservice. Essentially, self-care involves looking after and prioritizing our physical, spiritual, mental, and…
As most of us know, sickle cell can be a debilitating disease. I’ve been diagnosed with it since I was 18 months old, yet it still causes me much pain, agony, and difficulty. I have trouble making plans, enjoying an active social life, and exercising, and it’s even…
It was a warm morning in Ocho Rios, Jamaica, early this year, and I’d just woken up. I rolled over, picked up my phone, and undertook my usual checks before proceeding with my day. While I was scrolling, my phone rang, and I recognized the number. It was my hospital…
In discussions about sickle cell disease, the term “sickle cell trait” is often bandied about. But what does it mean? Scientists have found that sickle cell trait originated as an evolutionary response to malaria, one of the deadliest illnesses in tropical regions. The trait offers natural protection…
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