Healthy Habits: Sickle Cell Disease

 The end of summer represents a key period of transition in the lives of young adults as they go back to school, head off to college, or move out of their childhood homes for the first time.

 

These transitions are particularly challenging for those with compromised immune systems or chronic illnesses, such as young people living with sickle cell disease (SCD), a lifelong inherited blood disorder that mainly impacts African Americans and minorities. Complicating matters, people with SCD are at increased risk of severe illness from COVID-19, and they are subject to stigma in healthcare settings due to cultural barriers and misinformation, which makes it difficult for them to get the care they need.

 

Young adults with SCD face a critical period of transition as they move from pediatric to adult care and will now have even more weighing on their minds as they continue to work to protect their health. Whether they are heading off to college this fall or preparing for this phase while they are still in high school, here are a few tips to help people with SCD and their families manage this transition period during the pandemic:

• Know what to look for in your new medical team, like a doctor who is knowledgeable about SCD
• Be prepared to speak openly with doctors about your experience with SCD and medical history
• Take advantage of telemedicine to continue seeing your doctor while staying safe from COVID-19
• Develop healthy lifestyle habits, such as eating nutritious food and drinking enough water
• Find a virtual or in-person patient support group or community-based organization

Our guest, KC Morse, who grew up with SCD and is now a middle school teacher, can speak to her experience transitioning to adult care. She also faced challenges associated with misconceptions about SCD, including facing racism during her care and being labeled a “drug seeker” when she sought help. Because of these experiences, KC has become an advocate and proactively manages her disease with the latest knowledge and innovations. She is sharing her story, and the healthy habits that helped with her transition to adult care, as part of her efforts to support others in the SCD community. 

Additionally, Dr. Wanda Whitten-Shurney, a pediatric hematologist/oncologist at Children’s Hospital of Michigan and CEO of the Sickle Cell Disease Association of America (Michigan chapter), can provide her expertise on why it is so important for young adults with SCD to stay up to date with their medical care during times of transition. Inspired by her father, the late Dr. Charles Whitten, one of the great pioneers in SCD, Dr. Shurney is dedicated to guiding patients as they move from pediatric to adult care and providing helpful resources, such as how to find a new support system virtually or on campus, to help ease the transition process.

Interview is courtesy: Global Blood Therapeutics, Inc.