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…
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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…
For me, one of the worst parts of having sickle cell disease, aside from the horrific, debilitating pain of a crisis, is navigating the emergency department here in the U.K, where I live. I appreciate that it’s a high-pressure work environment that brings heavy responsibility, and it…
It took me a while to realize that intense emotions can lead me to a sickle cell crisis. Most of my health professionals never mentioned it when educating me about crisis triggers. From what I’ve learned as a physician, emotional triggers aren’t researched or documented enough. Hence, the…
Smile, be polite, be eloquent, and watch your tone to ensure others feel comfortable. These are my thoughts during daily interactions. Unfortunately, because of the negative preconceptions about Black men, my day-to-day is centered around putting others at ease. I often have to code-switch or behave in a more…
I recently got a new manager at work, which has improved my quality of life as a disabled worker. This change also instigated the creation of an emergency evacuation plan for me, and that change I question. To be clear, I’m not a wheelchair user, but I occasionally use…
Recent Posts
- New diagnoses result in new grief and a new relationship with my body
- Study finds lower treatment use among SCD patients in sub-Saharan Africa
- Outside, looking in: The silent isolation of living with sickle cell disease
- Bias in sickle cell care may be tied to opioid stigma, new study finds
- How I advocate for my health needs while traveling for work
- Brain development changes seen in children with sickle cell anemia
- Beam to seek OK of gene-edited cell therapy risto-cel for sickle cell disease
- Agios to seek accelerated approval in US of oral mitapivat for SCD
- Japanese agency awards $32M to advance sickle cell treatment to trials
- Intentional lifestyle changes got me through winter without a crisis