Recently, I’ve been trying to recall what the pain from a sickle cell crisis is like. Not remembering must sound a little weird, since a crisis is my most prominent symptom of sickle cell disease. Even on good days, I should have a solid grasp of what…
Columns
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 depended on optimism to protect my sanity, but I’ve always known I needed to be realistic. Sickle cell disease affects people on a spectrum, and pain is always a feature no matter where someone lies on that spectrum. My son, a 2-year-old with sickle cell, and I have…
Now that the summer months have passed, I find that it’s harder to forget that I have sickle cell disease. You may be thinking, “How can she ever forget that she has sickle cell?” Well, I never really forget, but there are times when looking after myself requires less…
The mind is a powerful tool. One phenomenon I’ve become aware of in the last year is speech impairment after a sickle cell crisis. It’s as though the volume of my voice has been turned down and no one can hear me. I’m usually soft-spoken, but during this phenomenon,…
I would love to go on one of the Bali swings I always see on social media and then capture the moment. However, my friend informed me that the reality is that there are long queues and it’s not as good as it looks in photos. The reveal…
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…
The cooler and sometimes gloomier weather of autumn has begun to kick in here in London. However, I’m still daydreaming about the amazing summer I had. A few weeks ago, I was in a villa in Cyprus with most of my friends, where I had such a great time. This…
For many young people, summer has come to an end and the new school year has begun. School, no matter the grade or level, comes with both mental and physical challenges. It’s important that we equip children with sickle cell disease with the knowledge and tools they need to…
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…
Recent Posts
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- Outside, looking in: The silent isolation of living with sickle cell disease
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- How I advocate for my health needs while traveling for work
- Brain development changes seen in children with sickle cell anemia
- Beam to seek OK of gene-edited cell therapy risto-cel for sickle cell disease
- Agios to seek accelerated approval in US of oral mitapivat for SCD