Disability carries a strong stigma, and there’s widespread global ignorance about its meaning. While many associate disability solely with physical or mental impairments, the true definition encompasses more. Many Africans with…
In the past, I would eagerly anticipate news of drug approvals for the management of sickle cell disease. The potential of new medications usually offered a glimmer of hope for sickle cell patients like me. The possibility that they could improve management of the disease and positively affect the…
Having a child with sickle cell disease can prompt many emotions for parents, particularly guilt. In this column, I’ll discuss some of the factors that contribute to this type of guilt and provide guidance on how to cope with it. In my many years of living with sickle…
Sickle cell disease, as most of you readers know, is a group of genetic blood disorders characterized by chronic anemia, acute and chronic pain, organ damage, and a possibly reduced life expectancy. But despite the virulence of this disease, it’s highly under-researched. A significant knowledge gap exists between…
Caregivers for people living with sickle cell disease provide physical, emotional, and sometimes financial support. They can be parents, siblings, spouses, friends, children, and extended family. I think healthcare professionals can be caregivers, as well. Their role is crucial to the overall health of anyone with sickle cell.
Jaundice is one of the most prevalent manifestations of sickle cell disease. Caused by an excess production of the compound bilirubin, jaundice results in a yellowish discoloration of the skin, mucus membranes, and the white part of the eyes, which is called the sclera. In this column,…
Second in a series. Read part one. Living with sickle cell disease presents a unique set of challenges. Unfortunately, some health professionals exacerbate these difficulties with insensitive and uninformed remarks. In my last column, I discussed some hurtful and unnecessary comments…
First in a series. Living with sickle cell disease can be incredibly challenging, especially when healthcare professionals make inappropriate and hurtful remarks. These comments contribute to poor pain management and health outcomes, and perpetuate stigma and discrimination against sickle cell patients. As a physician and…
The nature of sickle cell pain crises is often misunderstood due to inadequate knowledge and research. This limited understanding extends even to healthcare professionals. It’s crucial to recognize that many common assumptions about crises — including their onset, duration, location, character, severity, and ending — are inaccurate. Drawing from…
Joining sickle cell support groups has proven invaluable for me in navigating the challenges of living with the disease. The benefits I’ve gotten from these groups have far outweighed the drawbacks I’ve encountered. In 2018, I joined several support groups while struggling with avascular necrosis, which left…
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