Joining sickle cell support groups has proven invaluable for me in navigating the challenges of living with the disease. The benefits I’ve gotten from these groups have far outweighed the drawbacks I’ve encountered. In 2018, I joined several support groups while struggling with avascular necrosis, which left…
Columns
The past few months have brought me a stretch of good health. Because the cold can trigger a sickle cell crisis for me, I tend to have fewer issues during the summer. I’ve also been taking my vitamins and supplements, eating a healthy diet, doing what’s…
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…
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.
Recent Posts
- FDA reviewing Casgevy for children with sickle cell as young as 5
- When a sickle cell pain crisis interrupts a stretch of good health, part 2
- Gene-editing therapy frees first trial participant from SCD symptoms
- Why I refused to stay silent about my sickle cell disease
- Stem cell transplant for SCD beats gene therapy on cost: Study
- Fulcrum scraps sickle cell drug after FDA raises safety concerns
- Elevated levels of hormone EPO tied to risk of blood clots in SCD: Large study
- Use of disease-modifying therapies on the rise in SCD: US study
- Reflections on grief, loss, and a philosophy of life with sickle cell
- Higher vitamin A linked to better lung function in sickle cell anemia