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.Keeping with the theme of February, the month of love, I wanted to offer some practical tips for how to support a partner with sickle cell disease. The reality of living with a chronic illness is that things may not always go well, as the condition can be unpredictable.
Because today is recognized as Valentine’s Day or “love day” across much of the globe, I want to explore the difficulties that can arise within romantic relationships when one partner has sickle cell disease. (Fun fact: Many parts of the Eastern Orthodox Church celebrate Saint Valentine on…
Here’s a feeling that I’m certain other sickle cell disease patients relate to, and who knows, perhaps their carers do, too: It’s astounding how much sickle cell can change the body over time. I know I say it often, but honestly, it feels like the disease has its own…
Sickle cell disease is highly misunderstood, and our patient community is acutely aware of this. One of the key lessons I’ve learned throughout my journey with this illness is the importance of a strong community. Fighting sickle cell each day and learning to navigate the world as a…
I recently had my first blood transfusion of the year. It’s one of the most common treatments for sickle cell disease. Two types of transfusions are used to treat sickle cell patients: top-up, or simple, in which healthy blood is delivered through a cannula, and exchange,…
Sickle cell disease is a constant, annoying “companion” in my life. My list of grievances about the illness is never-ending, but one of the things I find most daunting is the disease’s unpredictable nature. There’s almost no way to know when a sickle cell pain crisis will strike. Unfortunately,…
Living with sickle cell disease comes with a heavy cost. Much of your time is spent seeking to understand your body, how the condition impacts you as a person, and then adjusting your lifestyle to maximize this knowledge. This is a never-ending process because life takes you through seasons,…
One Saturday evening, I was sitting on the sofa with my husband watching a film. Suddenly, I felt a sharp, stabbing pain pierce through my chest. “Babe, call an ambulance,” I uttered just in time before falling to the ground and screaming in agony. A standard weekend had become something…
I’ve previously written about the difficulties I’ve sometimes faced when trying to get my prescriptions filled to treat sickle cell disease. In a stroke of luck about a year ago, I found a pharmacy that is much better suited for my needs. The staff at this particular pharmacy is…
The past few weeks have been extremely difficult — heartbreaking, even. Here in the U.K., I’ve seen two recent reports about sickle cell patients dying from negligence. Both of their deaths were preventable. As MyLondon reported in September, Dave Onawelo presented to the emergency department in December 2023 and…
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