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.
For those who are unfamiliar with my previous columns, I often write about a recurring theme: the importance of preventive action in the management of sickle cell disease. I am a staunch advocate of identifying health risks and doing what I can to prevent them. I take my…
Last Friday was notable for two reasons: my most recent column was published, and I canceled a planned meeting with two friends at the last minute because of pain. That had me feeling quite deflated and annoyed because I’d made plans I couldn’t realize because of my…
I’m extremely passionate about raising awareness of sickle cell disease. That probably comes as no surprise, considering I have the condition and write a patient column focused on precisely that! Still, I like to imagine how greater awareness could improve our patient care and quality of life. It’s…
I recently suffered a sickle cell crisis while on a trip to Jamaica, which was particularly difficult because my partner was also ill. I was in an unfamiliar location, and the pain was far worse than usual. But I was prepared, I thought. A few years ago, I…
Is there a worse feeling than when someone you love is unwell and you can’t help them? Because I have sickle cell disease, my immune system is compromised. This means I can catch illnesses easily. When I do get sick, it can be disastrous. A typical cold or flu…
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…
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