Sickle Unshackled - a Column by Sylvia Amuta

When I began writing this column, I thought I knew exactly what I was stepping into. As a doctor, I’d spent years studying sickle cell disease, memorizing its complications, and prescribing treatment plans. What I didn’t know was how much more there was to learn on the other…

Being a caregiver to someone with sickle cell disease isn’t a role anyone can truly prepare for. It’s a calling that finds us, and it stems from love, loyalty, and necessity. My caregiving journey began with caring for my cousin, a vibrant, witty, and spirited soul whose strength…

Caregiving is a journey I hold close to my heart, especially as it involves my dear cousin Ada, a vibrant adolescent and a true warrior living with sickle cell disease. Yet I must admit, this journey hasn’t been without its shadows. As a healthcare professional who has seen the…

Caring for my young cousin Ada, who battles sickle cell disease, has taught me so much about the ways in which chronic pain can wear down even the strongest of spirits. Each pain crisis feels like a wave crashing over her, relentless and unforgiving. With every failed attempt…

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…

Dealing with sickle cell disease poses unique challenges that affect not only patients but also their loved ones and caregivers. It is crucial to communicate fully about the disease with those around us. As the primary caregiver for my adolescent cousin Ada, who has sickle cell disease and…

As the school holidays approach here in Nigeria, the excitement in my household is palpable. My kids, along with my cousin Ada, who lives with sickle cell disease, are eagerly looking forward to the break. The holidays promise longer sleep hours, extended screen time, and endless play under the…

As caregivers, we often find ourselves riding a roller coaster of emotions, with each twist and turn bringing forth a new wave of feelings. Caring for a loved one with chronic illness can involve moments of joy and relief, as well as bouts of sadness and guilt. In my journey…

When Ada, my cousin with sickle cell disease, came home from school one day filled with excitement, I couldn’t help but wonder what had happened. She shared that she’d made a new friend in her class and that they’d become quite close. My attention was piqued when Ada, whom…

New Year’s resolutions were never really my thing. In the past, my attempts often fizzled out quickly — like the gym membership that gathered dust by February. To avoid disappointment, I swapped out strict goals for a list of hopeful, more gentle aspirations. This year, topping that list was a…