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.
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…
Health-related stigma, as I discussed in my last column, is not the only stigma that afflicts those with sickle cell disease. There’s another stigma attached to it, one more localized, that can still have a detrimental effect on the patient. I’ll refer to this as culturally influenced…
Living with sickle cell disease means dealing with constant fatigue and painful vaso-occlusive crises. These symptoms can impede on a normal life with wide-reaching implications, such as limiting social or work capabilities. Unfortunately, sickle cell also carries a stigma, both in life and within healthcare communities. Getting…
In a previous column, I gave a brief overview of my family’s experience with sickle cell disease. Both my parents have the sickle cell trait, and of their four children, I’m the only one with sickle cell disease. One of my siblings has normal blood and two…
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