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…
Even though I already had my hands full with two toddlers, I agreed to help take care of my young cousin when my mother suggested it. She’d called to tell me that my aunt Celina, who’d recently lost her first son to sickle cell disease and was still in…
As a child, I was never exposed to serious illnesses like sickle cell disease. Now that I think about it, I was really blessed in that respect. The first time I heard about sickle cell was when I was a teenager and my older sister characterized her best friend…
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