Sickle cell disease is one of the most common serious genetic conditions affecting people in England, where I live. An estimated 15,000 people have the disease here in the U.K. According to the Sickle Cell Society, approximately 300 babies are born with sickle cell each year in…
Columns
As my little cousin Ada voiced her desire to take part in her school’s sports competition games, a surge of concern washed over me. Her recent recovery from malaria had left her in a delicate state, and the thought of her training rigorously during this time troubled me. I’ve…
Living with sickle cell disease in Nigeria, where I’m from, often entails hiding one’s condition because of societal stigma. However, I’ve chosen to defy this norm and speak openly about my sickle cell challenges. When I was 11, my parents disclosed my health condition to me. At the…
The pain from a sickle cell crisis is difficult to describe. To explain, I’d compare it to getting your hand repeatedly slammed in a car door, with that pain searing every second throughout the event. Suffering through one of those episodes is physically, emotionally, and mentally challenging. But to…
As a teenager with sickle cell disease, I thought that one of my biggest challenges in life would be disease management. I worried about what my life would look like, how many medications I would have to take each day, and whether I would be able to have…
In my previous column, I explored the overwhelming emotions and fatigue I experience as a caregiver to my young cousin with sickle cell disease. However, I didn’t share the invaluable strategies I’ve developed to cope with these challenges. Today, I aim to shed light on the methods I’ve…
Numerous myths about sickle cell disease persist globally, leading to negative attitudes toward patients. As a result, many people with sickle cell conceal their diagnosis and are reluctant to seek medical care and treatment to avoid facing stigma and discrimination. Their physical and mental health may also…
Over the past month, I’ve had caregivers, friends, and siblings of patients with sickle cell disease reach out to me with questions about how to better support their loved one. Each scenario I’ve read has reminded me how difficult it can be to support someone with a chronic condition.
Continuing the spirit of offering suggestions to make the healthcare experience more efficient for patients and the National Health Service (NHS) here in the U.K., I want to address the restrictions governing which hospitals ambulances can take patients to. My previous two columns have detailed how the need…
When I embarked on this journey as a caregiver for my cousin Ada, who has sickle cell disease, I soon realized that this path, brimming with love and dedication, also presented an unseen battle: caregiver burnout. Following are some of the frequent challenges I’ve faced — and…
Recent Posts
- Intense crises: When sickle cell pain becomes unbearable
- Newer blood thinners tied to less bleeding in sickle cell disease study
- 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