“Disabled” is not a pejorative, but it definitely felt like one when I was growing up. The U.S. Centers for Disease Control and Prevention defines disability as “any condition of the body or mind (impairment) that makes it more difficult for the person with the condition to do certain…
Her Sickled Journey – a Column by Tito Oye
Preparing for Lockdown 2.0
COVID-19 cases are increasing again here in the U.K., and government officials can no longer prioritize improving the economy over protecting people’s health. Instead, they must acknowledge the toll the virus has taken on people and the pressure a high number of cases will place on the National…
I have felt pretty overwhelmed lately. After months of sheltering at home and being relatively inactive, I’ve suddenly taken on a ton of new responsibilities. I’m trying to get into the habit of having a busy schedule again and managing my time more effectively, but sometimes I feel like I’m…
One of my favorite features is my smile, and I find that in life, I have many things to smile about. I have very good people around me who provide an amazing support system, I have a home, I have a job, I live in a country that provides…
I share much about my journey with sickle cell disease on social media. I find it to be a handy tool in raising awareness, because it allows me to do so many things. For example, I can share facts about sickle cell disease, as well as details…
Friendships are beautiful and make life much more meaningful. I love being in the company of friends. They have been a blessing in many ways, especially when it comes to my health. For a long time, I didn’t talk to my friends about my health. I kept all my health…
Needing to go to the hospital due to a vaso-occlusive crisis is never ideal or pleasant. As a kid, the idea of going to the hospital was a nightmare to me. I never really understood the importance of seeking medical attention when I experienced a bad crisis, and I…
After many months of sheltering in place, or shielding, as we call it here in the U.K., the time finally came for me to leave my house for reasons unrelated to medical issues. The government had paused shielding requirements, but I had been committed to continuing my self-isolation indefinitely…
Having a lifelong condition like sickle cell disease forces people to grow up pretty quickly. We must acknowledge certain responsibilities early on, and we can’t afford to ignore them because we don’t want ignorance to worsen our health. Many have the luxury of growing up without health concerns,…
Just like that, it’s September again – aka Sickle Cell Awareness Month. Sickle cell awareness means shining a light on sickle cell warriors and revealing what life is like with the condition. Not just the science, but the real people dealing with it. This is our…
Recent Posts
- New reimbursement deal in Germany expands access to Casgevy for SCD
- New York study finds regional gaps in sickle cell disease hospitalizations
- When a sickle cell pain crisis interrupts a stretch of good health, part 1
- Scientists discover how stressed red blood cells make hemoglobin
- How my sickle cell disease advocacy has evolved over time
- New study links sickle cell anemia to lower ovarian reserve in women
- $3M Breakthrough Prize honors duo whose work changed SCD treatment
- Etavopivat Phase 3 results support potential approval in sickle cell disease
- New diagnoses result in new grief and a new relationship with my body
- Study finds lower treatment use among SCD patients in sub-Saharan Africa