Last week, I shared news of my most recent hospital admission for sickle cell disease. One of the by-products of a sudden hospitalization is the interruption to my social life, family life, and work life. Because of ableism and discrimination, navigating the workplace as a disabled employee…
Columns
Growing up in South London is a rare experience. There’s a plethora of rich and diverse African and Caribbean communities that have influenced the area’s culture. Word of mouth goes a long way, and sharing stories builds relationships and community. These stories often feature our lived experiences, including the injustices,…
If you’re a regular reader of this column, you probably noticed I’ve been silent for a few weeks. Unfortunately, I had a sickle cell crisis and was hospitalized. The good news is that I’ve been discharged and am home, where I’m progressing toward full recovery. The other news…
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 I reflect on my life’s journey with sickle cell disease, I’ve concluded that one of the most important factors in managing it is having a sound support system. A great support system has made the journey easier and the load lighter for me, alleviating some of my challenges.
Experiencing different cultures has made me appreciate how people interact with the world. I’ve been reflecting lately on how culture has influenced my actions, especially my advocacy for sickle cell patients. Both my parents are from Sierra Leone, and I was born and raised in London. Sierra Leoneans have…
I recently shared my thoughts here on why accepting the reality and implications of a sickle cell diagnosis is essential for both patients and their loved ones. One element of my support system is a virtual group of sickle cell patients. We all aim to share knowledge and…
Here in Nigeria, growing into adulthood with sickle cell disease used to be considered an impossibility. Sadly, people like me who were living with sickle cell disease were labeled as “abiku,” which means “born to die soon.” I, too, was told by many that I wouldn’t survive beyond…
I recently shared my journey to accept my diagnosis of sickle cell disease. When people are told they have an illness, it not only affects them, but those around them as well. It’s therefore not just patients who have to accept the journey ahead, but their loved ones, too.
This month is special for me. On June 14, I celebrated my third anniversary of writing this column for Sickle Cell Disease News, and June 19 will mark both World Sickle Cell Day and Juneteenth. The past three years have been quite a journey, and I’m…
Recent Posts
- New York study finds regional gaps in sickle cell disease hospitalizations
- When a sickle cell pain crisis interrupts a stretch of good health, part 1
- Scientists discover how stressed red blood cells make hemoglobin
- How my sickle cell disease advocacy has evolved over time
- New study links sickle cell anemia to lower ovarian reserve in women
- $3M Breakthrough Prize honors duo whose work changed SCD treatment
- Etavopivat Phase 3 results support potential approval in sickle cell disease
- 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