Embodied ‘I’ve Got The Same Thing You Do’: Ehlers-Danlos Across Generations
Feb 20, 2025
In this engaging discussion, Soph Myers-Kelley, a medical librarian, and her mother, retired educator René Myers, open up about their shared journey with Ehlers-Danlos Syndrome. Diagnosed one year apart, they delve into the emotional and physical challenges of living with a chronic condition. The pair reflect on their deepening bond, navigating pain, and the significance of self-advocacy in healthcare. They also share insights on finding joy and resilience amid struggle, making this conversation as enlightening as it is heartfelt.
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Early EDS Memory
- Renee's earliest EDS memory of Soph was when Soph was two or three and dislocated their elbow.
- It happened again, and their doctor taught Renee how to put it back in place.
Running Pain
- During middle and high school, Soph experienced excruciating pain while running in gym class, unlike other kids.
- This was later understood as an EDS symptom, highlighting the contrast between normal discomfort and EDS limitations.
Misdiagnosis and Aging
- Renee was often told by professionals that losing weight or exercising would alleviate her pain.
- Despite following their advice, the pain persisted, leading her to believe it was a normal part of aging.
