Living with sickle cell disease is no easy feat. At 32, I still struggle to understand my body and live as freely as I’d like. Because it’s within our power to prevent children from experiencing this horrible, debilitating disease, I believe in doing everything possible to avoid passing it…
Columns
I recently started a new job with a charity, and my new colleagues are hands down the most understanding group of people I have ever worked with. I’ve always felt the need to avoid the subject of my health during job interviews, but, as with my previous job,…
Growing up in my African household, religion was a core element of my upbringing. As a family and community, we would thank God for all aspects of life and pray diligently for healing and blessings. But as a child, I struggled with this because I felt ungrateful, constantly asking…
If you haven’t already, I would recommend you get your genotype tested. Sickle cell is an inherited disease. This means if both parents carry a sickle gene, there is a chance the baby can have sickle cell disease. If both parents have the sickle cell trait, there is…
I love playing adventure games, especially those in which your decisions affect the story’s outcome. For example, if you choose to steal, you’re a villain, and if you choose to share your possessions, you start down the path toward becoming a hero. The choices may be small in the grand…
Last weekend, I had plans to go to brunch with a group of friends I hadn’t seen in a while. We planned it quite a few weeks in advance, and I was really looking forward to being out socially and catching up with them. But on the morning of the…
Representation of different people in all areas of society is key to empowering the next generation. Having a role model that looks or talks like you validates your own experience. But as a Black man with a chronic condition, role models in my community were few and far between. For…
I speak for many mothers when I say that receiving my child’s sickle cell diagnosis left me thinking he would be incapacitated. I thought he would be in pain every day, with a poor quality of life and unable to do normal daily activities. Considering many of my family…
April is my birth month, and as my birthday approaches, I am deep in thought. My thoughts flash ahead, worrying about how close I am to old age. Similarly, I go backward in time, reflecting on my life and my saga so far, wondering where all the time went.
In my last column, I wrote about finally being discharged after a lengthy hospitalization. Once I got home, I rested for about a week and then decided to return to work. Maintaining a successful, full-time career while having a disability like sickle cell disease requires good decision-making…
Recent Posts
- Study finds lower treatment use among SCD patients in sub-Saharan Africa
- Outside, looking in: The silent isolation of living with sickle cell disease
- Bias in sickle cell care may be tied to opioid stigma, new study finds
- How I advocate for my health needs while traveling for work
- Brain development changes seen in children with sickle cell anemia
- Beam to seek OK of gene-edited cell therapy risto-cel for sickle cell disease
- Agios to seek accelerated approval in US of oral mitapivat for SCD
- Japanese agency awards $32M to advance sickle cell treatment to trials
- Intentional lifestyle changes got me through winter without a crisis
- Chicago nurses lead charge to speed up SCD emergency care: Study