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.
Last month, I suffered a sickle cell crisis. After battling the pain for four days, I decided to go into the hospital on Dec. 12. Unfortunately, that was a challenge. The first hurdle was securing an ambulance. For the first time in my life, I was put on hold…
For me, 2022 has just been OK in terms of sickle cell disease. I’m still not where I’d like to be health-wise, but I’m getting closer. One thing I’d really like to celebrate is that I haven’t contracted any severe infections this year. That is a big win, and…
Earlier this week, I received an email that left me in tears. Its content is unimportant. But what I can share is that it was disappointing and related to things I require to manage sickle cell disease. I had been fighting for these things for nearly two weeks. My…
When children become adults, they must transition from pediatric to adult healthcare services. Transition programs are particularly important for helping patients with chronic conditions navigate this switch. A good program ensures patients are informed about any changes to their care and treatment, and I believe it should also help…
Imagine: You’ve had a long and stressful few months, you’ve accrued some leave at work, and you’ve saved up some money, so you decide to take a holiday. You already have a bucket list of locations you want to visit, so selecting a holiday destination, accommodations, and itinerary took you…
It had been roughly four weeks since my port-a-cath was inserted, and I was due for my next blood transfusion. However, that transfusion would be different than previous ones — it was an exchange transfusion, when until that point, I had mostly been receiving only top-up…
When living with a condition like sickle cell disease, effective communication between different hospital departments and the patient is imperative — especially when the patient is having a surgery that could result in complications. I recently had a port-a-cath placed so I can receive blood exchange transfusions…
I’ve shared that I’m on a blood transfusion program as part of my sickle cell treatment. There are two key types of blood transfusions: blood exchanges and top-up transfusions, which are quicker and delivered through a cannula, usually inserted into the hand. I started undergoing top-up…
In my previous column, I shared that I’d contracted what I think was food poisoning, which led to dehydration and, subsequently, a sickle cell crisis. In seeking medical attention, I faced several hurdles while navigating my local ambulance services. Unfortunately, the hurdles often continue even after I’ve arrived…
I was recently hospitalized for a sickle cell crisis. You see, I’d planned to go to dinner with a lovely friend whom I hadn’t seen since before the pandemic. But that was for the evening. When my sister-in-law reached out to ask my sister and me to join…
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