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…
Dear Sickle Cell – a Column by Michelle Harlan
Note: This column describes the author’s own experiences with hydroxyurea and thoughts about other treatment options. Not everyone will have the same response to treatment. Consult your doctor before starting or stopping a therapy. I spent the first week of the year recovering from a nasty cold. After two…
The beginning of a new year often feels overwhelming. I tend to ride a wave of excitement after spending time with family and friends, even as I feel a great deal of anxiety about setting health-related goals for the upcoming year. The media can make me feel as if my…
I have a confusing relationship with winter. It’s one of my favorite seasons, but it causes me the most harm. It’s not unlike that one pair of shoes that look amazing on, but leave you with blisters and bruises. But my “blisters” are severe musculoskeletal pain and my “bruises”…
“Thank you for giving me grace while I dropped off the face of the earth last week.” I regularly make this kind of comment to my best friend, who has known me since I was 4 years old. Because of sickle cell disease, I sometimes neglect to respond when…
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…
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…
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…
Recent Posts
- New reimbursement deal in Germany expands access to Casgevy for SCD
- New York study finds regional gaps in sickle cell disease hospitalizations
- When a sickle cell pain crisis interrupts a stretch of good health, part 1
- Scientists discover how stressed red blood cells make hemoglobin
- How my sickle cell disease advocacy has evolved over time
- New study links sickle cell anemia to lower ovarian reserve in women
- $3M Breakthrough Prize honors duo whose work changed SCD treatment
- Etavopivat Phase 3 results support potential approval in sickle cell disease
- New diagnoses result in new grief and a new relationship with my body
- Study finds lower treatment use among SCD patients in sub-Saharan Africa