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Just when you think sickle cell disease can’t get any stranger, it does. Growing up, I had a habit of eating tissue and paper that continued until I was about 15. (I’m really exposing myself here.) It makes sense how such a habit could arise. As babies, we…

Several decisions I make regarding my health are weighed up and thought out on a finely balanced scale. A sickle cell crisis can happen at any moment, so doing what I can to avoid my triggers is always at the forefront of my mind. I’ll contemplate questions like,…

As someone with sickle cell disease, I’m very passionate about blood donations because this selfless act of kindness can change a person’s life, or even save it. Many donations go toward blood transfusions, a critical treatment for sickle cell patients. I can’t donate blood, so my advocacy efforts…

Advocating for the sickle cell disease community means drawing on my experiences to help communicate the issues its members are facing, and to attract, engage, and educate a general audience. But this takes a toll on me, as many of my memories are unpleasant and traumatic. Even so, I continue…

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…

As a sickle cell advocate, a key skill I’ve had to learn is patience. I need patience to listen, to understand, and to let go of negativity. Early in my advocacy journey, I was speaking at an event, and an audience member shared their experience of having a family member…

A new year often means a fresh start, with new goals, habits, and challenges. For the past few years, to help me better focus, I’ve been writing a list of goals I want to achieve in each new year. Some of these goals build on things I already do, such…

Happy New Year! It’s 2022, and my New Year’s resolution is the same as always: to experience and maintain good health. I’m not completely naive. I’m acutely aware of how sickle cell disease works, and I know I can’t predict many of my health hurdles. Thus, it’s almost impossible for…

As part of the U.K.’s National Health Service, it is common practice for sickle cell disease patients to have routine checkups with their hematologist. These routine checkups include collecting blood and urine samples, reviewing patients’ care plans, and making general health assessments. I have…

I have been experiencing a lot of pain lately due to sickle cell crises. I previously wrote that my crises have started to correlate with my menstrual cycle, but I’m now experiencing them daily. Admittedly, I’m not experiencing the worst pain ever, as I’ve been able to manage…