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…
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…
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…
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…
Traveling is one of my greatest passions. I enjoy seeing new things and immersing myself in different cultures, especially through local cuisines. Living with sickle cell disease means I have to take extra precautions when traveling, especially amid the COVID-19 pandemic. Unfortunately, my trips don’t always go as…
The results of a government inquiry tasked with investigating the failures of sickle cell care in the U.K., published in a report titled “No One’s Listening,” reveal evidence of substandard care, inadequate training of healthcare professionals, and attitudes that were underpinned by racism. Since these findings were released, there…
As an adult, I’ve been privileged to have a small community of sickle cell patients that I can connect and share experiences with. As winter approaches here in the U.K., I’ve noticed on social media that many sickle cell patients are in the hospital. I empathize with them, because it…
In the animated TV series, “One Piece,” a skill called Kenbunshoku Haki lets its users glimpse into the future, allowing them to dodge bullets and punches, and in some instances, even evade death. I think that would be a great power to have…
Get regular updates to your inbox.