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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…

At this stage in life, I know my body pretty well. I’ve gotten better at avoiding my triggers, which means I have fewer sickle cell crises than I used to. For example, I try not to expose myself to cold weather, exhaustion, or stress, but that alone can be…

Once a sickle cell crisis surpasses my manageable pain threshold, it sadly becomes time for me to go to the hospital. Hospitalizations always fill me with despair and anxiety due to past experiences, so I reject the notion unless I’m facing dire circumstances. My past experiences have not been…

Winter has finally arrived here in the U.K.  I really dislike the winter, in case you didn’t know. One of my biggest sickle cell disease crisis triggers is cold weather. Although sickle cell patients have different pain crisis triggers, almost all sickle cell patients are triggered by cold…