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…
Second in a series. Read part one. In my last column, I outlined several “red flags” that people with sickle cell disease should be wary of when dating. These include partners who lack a mind of their own, exhibit violent behavior, believe they’re doing someone a favor by…
Hello, June! This month is very significant in my life, with various celebrations and anniversaries. For one, I’ve spent two years writing almost weekly about my sickle cell disease journey on Sickle Cell Disease News! I was in awe that I lasted a couple of months and was…
Many sickle cell patients spend a lot of time in the hospital. As inpatients, our symptoms are treated, and as outpatients, our lives are monitored to keep our condition as controlled as possible. However, frequent hospital visits can be highly disruptive and hinder our ability to maintain a…
While I realize it’s impossible to plan for every eventuality, I often think about what I could’ve done better or differently to prevent a sickle cell pain crisis. Like the random bumps in life’s journey, a crisis can happen despite my best plans. A month has passed since I…
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…
First in a series. Love and relationships can significantly affect the lives of people with sickle cell disease. A good relationship can contribute to improved mental and physical health, while a bad relationship may lead to the opposite. Unfortunately, finding love can be challenging for people with sickle cell,…
For the past few days, I’ve been thinking about learned behavior. For example, why do I speak the way I do? Why do I respond to specific cues the way I do? Upon reflection, much of it stems from my environment, how I was raised, and with whom I interacted…
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…
In 2006, the World Health Organization recognized sickle cell disease as a global public health problem. Sickle cell is not just a genetic blood condition, but a multisystem disease that can damage organs and shorten life spans. Moderate or severe forms can be especially virulent. While some…
Get regular updates to your inbox.