Living with sickle cell disease requires more of a patient than just managing symptoms. One major necessity is the ability to effectively communicate one’s needs. Self-advocacy is a lifelong skill that enables people with the disease to effectively navigate healthcare systems, educational settings, workplaces, and personal relationships. When nurtured…
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As part of my advocacy, I frequently deliver keynote speeches and participate in panel discussions, and I’m often asked a particular question: “Is sickle cell disease a disability?” My answer is always the same. Here in the U.K., where I live, the Equality Act 2010 defines disability as…
I have a confusing relationship with winter. It’s one of my favorite seasons, but it causes me the most harm. It’s not unlike that one pair of shoes that look amazing on, but leave you with blisters and bruises. But my “blisters” are severe musculoskeletal pain and my “bruises”…
The challenges of living with a physical disability in a society that is not inclusive can be overwhelming. Sickle cell disease causes both visible and invisible disabilities, and as someone who experiences both, I have faced countless difficulties. I have discussed the struggles of living with invisible disabilities, but…
Sickle cell disease presents a range of complications, some of which are visible while others are invisible. For the first two decades of my life, I only dealt with invisible complications, which allowed me to keep my challenges private. However, as I entered my early 20s, the visible complications…
Today, I woke up with a severe headache — again! It’s been four long, exhausting weeks of feeling like someone has set up camp behind my eyes with a hammer. The ache pulses before I’m even fully conscious, as if sickle cell disease is trying to remind me who’s…
I write today to express my sincere appreciation for the care and love doctors, nurses, and all health professionals show to people with sickle cell disease. They are such remarkable caregivers. Where would we warriors be without their help? They are truly indispensable. However, as a healthcare professional living…
“Thank you for giving me grace while I dropped off the face of the earth last week.” I regularly make this kind of comment to my best friend, who has known me since I was 4 years old. Because of sickle cell disease, I sometimes neglect to respond when…
I have always been a passionate advocate for sickle cell disease prevention, sometimes even prioritizing it over advocating for a cure. I envision a world where no child has to suffer the complications and pain of the disease, although realistically, I don’t see that happening yet. Most of the…
I learned almost by accident that last week was Invisible Disabilities Week. I had no idea such a week even existed, which says something about the invisibility of disabilities in our society. The fact that something so significant can come and go with so little awareness speaks volumes about…
Recent Posts
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- A single word from mother continues to speak volumes about compassion
- How workplace adjustments allow us to contribute on an equal footing
- New grants fund research into bone pain, damage in sickle cell disease
- Deciding when to take pain medication is complicated with sickle cell disease