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My sickle cell disease advocacy journey began more than a decade ago, but it has changed shape many times. I have lived through a silent phase, an angry phase, a loud phase, a tired phase, and, finally, a more understanding phase. In my early teens, after learning about my…

I have often found that my experiences with sickle beta-zero thalassemia make me more resilient. I will recover from a weeklong hospital stay feeling stronger for beating the pain, and leave a doctor appointment feeling proud about how well I am adhering to my medications. But after my most…

The quiet, creeping isolation that comes with living with sickle cell disease is a reality we rarely discuss enough. When you live with a moderate to severe form of the condition, isolation becomes a recurring part of your existence. Through lived experience, I have learned that this isolation is…

Having a remote job has been a game-changer for me as someone with sickle cell disease. I’m better able to manage my health — no rushed mornings, cold commutes, or physical strain. I can plan my day to suit my body, whether that means resting, going to the gym,…

As the season shifts from winter to spring, I’ve found myself reflecting deeply on what this past winter has meant for me. Historically, winter has been the hardest part of my journey with sickle cell disease, marked by crisis flare-ups, increased pain, and a constant awareness of…

A sickle cell crisis isn’t a polite guest, and it often arrives unannounced. Over the years, I’ve learned that my crises either come on suddenly or build gradually, with subtle clues or a red alert. Recognizing these warning signs of a sickle cell pain crisis early is the first…

“When can I tell my child that they have sickle cell disease?” As a physician living with the condition, this remains one of the most frequent questions I receive from parents and caregivers. Many parents delay that conversation until their children reach their teenage years or older. Some only…

Leg ulcers are one of the most distressing and disabling complications of sickle cell disease (SCD). These open wounds mostly affect patients with sickle cell anemia (HbSS), although people with any type of SCD may experience them. The severity varies widely; some heal in weeks, while others…

One of my most important takeaways from therapy is the idea of building a body of evidence — proof that things can go well, and that my fears don’t always predict my reality. This applies to many areas of my life, but most recently to my relationship with cold weather,…

Pursuing a purposeful life while living with moderate to severe sickle cell disease can be very tough, as it presents a unique set of challenges. When the pain is frequent and the complications are real, it’s easy to lose track of one’s goals. However, I’ve learned that living with purpose…