Columns

In the fall of my sophomore year of high school, my hematologist recommended me for my pediatric sickle cell program’s teen clinic. At that point, I was going to the doctor every one to three months, with more frequent follow-ups after a vaso-occlusive crisis. After 13 years of…

As September comes to a close, so does Sickle Cell Awareness Month, an annual time dedicated to highlighting the realities, challenges, and resilience of people living with sickle cell disease. While the fight for awareness and equity continues daily, I’m cautiously optimistic that something is shifting. This year, I…

While I am not a board-certified hematologist, I am an expert on my personal experience with sickle beta-zero thalassemia. One might say I am “board-certified” in living with the condition! When I disclose my illness to someone new, they often ask, “How is sickle beta-zero thalassemia different from sickle…

Having a big or protruding abdomen is a common habitus or symptom of sickle cell disease. It’s something I’ve dealt with personally throughout my life and I understand how it can impact not only our physical appearance, but affect us psychologically and emotionally too. I have always…

Whew! I’ve been on a rough ride recently. Regular readers of my column may have noticed that I’ve been absent for a while. Living with sickle cell disease has taught me resilience, patience, and the importance of listening to my body. It’s also reminded me how unpredictable and overwhelming…

As I’ve grown older with sickle cell disease, I’ve come to appreciate the incredible community that’s emerged. This network connects us, amplifies our voices, and gives us a platform to share our experiences. I’ve been fortunate to meet some amazing sickle cell warriors who’ve helped deepen my understanding of…

When I was growing up, Beverly Cleary’s “Dear Mr. Henshaw” was one of my favorite books. The novel begins with Leigh, a sixth grader, writing to his favorite author (Boyd Henshaw) for a school assignment and receiving a letter back. The two become pen pals, and through writing letters and…

Over the years, I’ve used my voice as a sickle cell disease warrior, advocate, and health professional to point out the shortcomings of the government, the public, and the healthcare system when it comes to the worsening of sickle cell morbidity and mortality. But today, I need to turn…

Ten years ago, I signed up for a personal training session without telling the trainer I had sickle cell disease. He had no idea about my condition or my limits, so the workout was intense. I pushed through, but afterward I was violently sick and bedridden for days. I…

The past month has been incredibly difficult for me. I lost two close sickle cell warriors in a short time, which has been both heartbreaking and shocking. One of the hardest parts of running a sickle cell support group is experiencing this kind of…