As I sat in the sterile, fluorescent-lit room, a sense of determination and apprehension coursed through me. I wasn’t here for myself; I was here to donate blood for my little cousin, Ada, who was bravely battling sickle cell disease. The journey of being a caregiver for someone with…
Sickle Unshackled — Sylvia Amuta
Sylvia Amuta, a physician with nearly a decade of experience and a master’s degree in public health, resides in Lagos, Nigeria. She is a carer for her sickle cell disease-afflicted young cousin. Sylvia is active in the public health community and is passionate about sickle cell disease awareness campaigns because she has family members with the condition. In her leisure time, she enjoys writing, cooking, and working out. She is thrilled to be a member of the Bionews community, this site’s publisher, and believes that her column, “Sickle Unshackled,” will help to gradually dispel any stigma associated with the condition.
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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…
Dear Future Caregiver, As I look back on the transformative journey I’ve embraced as a caregiver to a person with sickle cell disease — its ups and downs, joys and frustrations, and profound sense of purpose — I want to impart some invaluable insights I dearly wish I…
Sickle cell is an inherited disease that profoundly affects red blood cells, posing significant health challenges for those living with the condition. My cousin Ada has bravely confronted this hereditary disease, and together we’ve traversed its ups and downs. Among the many concerns we’ve learned to manage, one…
Over the years, especially since I got married and had kids, my focus has been primarily on others, rarely allowing me the chance to think selfishly. Now, as a dedicated caregiver to Ada, my little cousin with sickle cell disease, I’ve learned to prioritize her needs above my own.
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…
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…
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…
Being a caregiver for my cherished little cousin, who’s battling the physical and emotional challenges of sickle cell, is an enormous responsibility, both rewarding and sometimes completely overwhelming. Seeing her endure not only the difficulties of her illness, but also the callous cruelty of bullying at school is…
It’s always frustrating to miss an event that you’ve been looking forward to for a long time — especially when it’s for reasons out of your control. Due to a sickle cell crisis, my little cousin Ada, who has sickle cell disease, was unable to attend her best…
Pain episodes brought on by sickle cell disease may come on suddenly and vary greatly from patient to patient. The ability of children and adolescents to chronicle and communicate their painful experiences may be facilitated by the use of diaries. I cannot stress enough how important it is for…
Healthy eating is crucial for those who suffer from sickle cell disease. It’s beneficial both for overall health and to avoid complications. For children with sickle cell disease, the breakdown of red blood cells requires more energy than in typically developing children. A child who is affected…
When traveling with someone who has sickle cell disease, it’s crucial to be well prepared for any emergencies that may arise. Most importantly, don’t forget to pack your regular prescriptions! I made that rookie error when I took an unexpected trip with my entire family, including my little niece…
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