Columns

I once believed that the stigma surrounding sickle cell disease only existed outside of the sickle cell community, perpetrated by those who don’t live with the condition. However, my experiences interacting with fellow patients and joining sickle cell support groups have revealed a harsh reality: Stigma,…

Every now and then, something happens that motivates me to educate others about how a particular action, policy, or system is oppressive to me, as a Black woman with sickle cell disease. It’s always a difficult conversation, but almost always necessary — in many cases for societal equity. This…

Managing sickle cell pain can be extremely challenging. While medical interventions remain the mainstay of treatment, nonmedical strategies like distraction can sometimes be effective in relieving mild to moderate pain. Distractions are therapeutic strategies, activities, or interventions that divert attention away from pain and discomfort, providing relief during…

Note: This column describes the author’s own experiences with fasting. Not everyone will have the same response to it. Consult your doctor before starting or stopping a fasting practice. Challenging myself has often been a double-edged sword. If I push too far, I end up with crisis pain…

The sickle cell community needs unity if we are ever going to see change. A few weeks back, I came across someone trying to start a charity for sickle cell patients. Ordinarily, you would think that as a sickle cell patient, I would find this heartwarming. But I had…

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…

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.