The story of Rose
I’ve spent my life in and out of hospitals, often relying on medical teams who had to Google Addison’s Disease as I lay essentially dying in an ambulance. That, along with the challenges of hypermobile Ehlers-Danlos Syndrome (hEDS), has left me with deep medical trauma—but also resilience.
Growing up, I was often unwell, bullied, and missed a lot of school. Even now, my life revolves around daily corticosteroids to prevent adrenal crises, alongside constant pain, stomach issues, and injuries. Both conditions impact every part of my life. I’ve had to give up or adapt so many passions, from pole fitness and theater to outdoor work. Yet, I’ve found ways to keep moving forward, becoming an adaptive athlete and dancer.
Few understand my conditions. Addison’s is a mystery to most, and dating often means teaching someone how to save my life with an injection. Travel, too, is hard—airports question my meds, and I can’t have most vaccines. Yet, I’ve traveled to 30 countries, and I’m determined to live fully.
Rare Disease Day reminds me I’m not alone. At 31, I’m still dreaming and fighting to make a difference for others with rare diseases.