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…
Shaniqua’s Sickle Chronicles
— Mary Shaniqua
Mary Shaniqua is a sickle cell patient (HbSS) living in the United Kingdom. She was diagnosed with sickle cell at 18 months old and uses “Shaniqua’s Sickle Chronicles” to narrate her experiences, to educate healthcare professionals, as well as empower and embolden other sickle cell patients. Mary Shaniqua is committed to raising awareness of sickle cell and its impact, with an aim to educate non-haematological specialist healthcare workers and the general public more widely on the life of a sickle cell patient.
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Years ago, I mistook a pulmonary embolism for what I thought was a minor sickle cell disease vaso-occlusive pain crisis, a mistake that could easily have proved fatal. I promised myself afterward that I would never trivialize my symptoms again. As it turns out, that’s easier said than done.
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…
In recent columns, I have written about why knowing your genotype is imperative when planning a family, as well as the steps to take to avoid having children with sickle cell disease. But for some, these simply are not options. Particularly for those already married, they may have…
Living with sickle cell disease is no easy feat. At 32, I still struggle to understand my body and live as freely as I’d like. Because it’s within our power to prevent children from experiencing this horrible, debilitating disease, I believe in doing everything possible to avoid passing it…
If you haven’t already, I would recommend you get your genotype tested. Sickle cell is an inherited disease. This means if both parents carry a sickle gene, there is a chance the baby can have sickle cell disease. If both parents have the sickle cell trait, there is…
Last weekend, I had plans to go to brunch with a group of friends I hadn’t seen in a while. We planned it quite a few weeks in advance, and I was really looking forward to being out socially and catching up with them. But on the morning of the…
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