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.
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…
In my last column, I wrote about finally being discharged after a lengthy hospitalization. Once I got home, I rested for about a week and then decided to return to work. Maintaining a successful, full-time career while having a disability like sickle cell disease requires good decision-making…
In my last column, I shared that I was in the hospital due to a sickle cell crisis. I have finally been discharged, thank God. I contracted an infection at the beginning of February that resulted in a crisis. I was hospitalized for five weeks and in extreme…
It’s been several weeks since my last column, because I was unfortunately hospitalized at the beginning of February. I was hoping to have been discharged by now, but sadly I’m still here. Last month, I contracted an infection that resulted in some horrible symptoms. I won’t go into detail, but…
I spent much of the fall of 2019 in the hospital due to a sickle cell crisis. It became so severe that it affected my organ function and triggered a severe case of avascular necrosis. I was hospitalized on Aug. 28 of that year, and by the…
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