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Sickle cell habitus, the distinct physical features of some people with sickle cell disease, are typically associated with patients who have more severe forms of the disease, such as sickle cell anemia. But the severity of sickle cell disease can vary greatly from one patient to another because of…

While I’ve been a sickle cell disease (SCD) advocate for more than two decades, I only seriously committed to this work after experiencing one of my worst complications: a case of avascular necrosis, which causes the death of blood tissue. It left me bedridden for…

First things first: Take a deep breath. Finding out your child has sickle cell disease can be overwhelming. It’s not what you planned or hoped for, and while it changes things, it doesn’t end anything. This diagnosis may bring a wave of guilt, fear, and grief. That’s completely…

Richard Bayliss, 44, has hemoglobin SS, a severe form of sickle cell disease that comes with anemia; thus, it’s sometimes referred to as sickle cell anemia. He’s in the final year of a master’s degree in education, culture, and society at a university in London. He also…

Several weeks ago, when news of the first sickle cell disease patient to be cured by gene therapy went viral online, I completely ignored it because I wasn’t interested. As a sickle cell advocate and educator, I was tagged repeatedly on these articles. Despite my initial reluctance to post…

Two of the most commonly known symptoms of sickle cell disease are a vaso-occlusive crisis (perhaps the best-known symptom) and fatigue. But others aren’t so well-known; in fact, I’d say most people aren’t aware of them. Here are a few of those lesser-known symptoms. Stunted growth. If you know…

In sickle cell disease, avascular necrosis (AVN) can occur due to the progressive impairment of blood supply to the bones caused by the sickling process. In AVN, the bone tissue dies and the bone collapses, as Johns Hopkins Medicine explains. The sickling process can also cause chronic anemia, blood…

Traveling to cold climates with sickle cell disease can be daunting. Low temperatures can trigger a crisis, causing intense pain and discomfort. None of us want that. I recently returned from a trip to chilly Switzerland, and preparing for the cold was crucial to ensuring my health stayed…

Sometimes it’s important to dive right in and conquer your fears. In 2018 and 2019, I suffered two major health events: a pulmonary embolism and a severe sickle cell crisis, which happened while I was on a flight. As a result, air travel has become extremely cumbersome…

I recently had a severe sickle cell pain crisis that forced me to go to the hospital for stronger medication than what I had at home. For the record, it’s been three years since that happened. Up until that point, all of my crises had been manageable at home.