05/17/2024
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Day 16: Reflections
University of Notre Dame students, Jamie and Kallie, are raising awareness of Ehlers-Danlos syndrome (EDS) as part of the Patient Advocacy Initiative program. Jamie and Kallie interviewed Francie Fitzgerald, a member of the Board of Directors of The Ehlers-Danlos Society and Notre Dame Alumni, who lives with hypermobile Ehlers-Danlos syndrome (hEDS).
During May, we'll hear about Francie's diagnostic odyssey and the challenges she faced, shared by many struggling with EDS and HSD. Here, we learn about Francie's reflections on learning to live with uncertainty.
"You never know what someone is going through just by looking at them due to invisible illness and the struggles faced behind them.
Living with EDS and POTS comes with the dichotomy of active days and medical-heavy days which can be very close together.
EDS requires a crash course in learning how to come to terms, and peace with, the challenges of life in general. It is a hard adjustment but I keep an open mind to learning what resources and steps to take forward."
Read Francie's story here: https://www.ehlers-danlos.com/story/francie-f/
Reflect on something you’ve learned from living with EDS or HSD and how it has changed your perspective on life.
