Here in the U.K., October is Black History Month, and this year’s theme is “reclaiming narratives.” I believe that theme is particularly apt for sickle cell patients. People with sickle cell disease have been subjected to false narratives for far too long. We face stigmas everywhere…
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If you’re a caregiver, do you ever feel like you always need to be strong? That you should be able to withstand everything life throws your way because someone else is depending on you? We caregivers have a tendency to put our emotions aside or bottle them up and wear…
When I’m running workshops for children with sickle cell disease who are transitioning into adult care, I always include a parent segment to teach them how to train their children to advocate for themselves. For patients living with sickle cell disease, including me, advocacy becomes an…
I’ve discussed before how infections have been a menace to managing sickle cell disease. I’ve also explained how sickle cell patients are more susceptible to infections because of our compromised immune systems, splenic dysfunction, and sometimes, chronic inflammation. Infections can be both triggers of sickle cell…
As a health professional and sickle cell patient, I’m constantly driven to create awareness about the disease. My motivation transcends professional duty; it’s a personal quest to make a difference. September may be National Sickle Cell Awareness Month, but for me, every month is an opportunity to educate…
For the sickle cell disease community, September is an important time for advocacy and raising awareness, because it’s National Sickle Cell Awareness Month. This year’s theme is “Sickle Cell Matters.” For me, the month isn’t only about raising awareness; it’s also about educating the public, advocating for…
I once thought I might be one of the few people living with sickle cell disease who do not experience mood swings. However, upon deeper self-reflection, I realized that I might very well be the queen of them. Mood swings are a common complication of sickle cell disease,…
I celebrated yet another birthday last week. I love birthdays. As someone living with sickle cell disease and the difficulties it brings, I’ve learned that life is fickle. Therefore, it’s important to be grateful for every year and to celebrate the gift of life. A celebration doesn’t always have…
I once believed that the stigma surrounding sickle cell disease only existed outside of the sickle cell community, perpetrated by those who don’t live with the condition. However, my experiences interacting with fellow patients and joining sickle cell support groups have revealed a harsh reality: Stigma,…
Every now and then, something happens that motivates me to educate others about how a particular action, policy, or system is oppressive to me, as a Black woman with sickle cell disease. It’s always a difficult conversation, but almost always necessary — in many cases for societal equity. This…
Recent Posts
- New year, old goals, because repeating health resolutions works for sickle cell
- Researchers compare gene therapies for sickle cell disease in mice
- Emmaus to sell North American rights to sickle cell treatment Endari
- For sickle cell patients, developing self-advocacy skills starts in childhood
- Standard sickle cell treatments slash stroke risk in children: Review
- Is sickle cell disease considered a disability?
- Tips for enjoying the most wonderful time of the year with sickle cell
- Big Nova donates $3M to expand access to stem cell transplants
- Investigational SCD therapy shows stronger results at higher dose
- Risto-cel showing lasting benefits for people with severe SCD in trial