In 1997, I was diagnosed with a rare disease: Ehlers-Danlos Syndromes: Hypermobile (EDS). I was told that the glue that holds my body together was defective and my joints would get earlier on-set of Arthritis. No patient education, no support or resources . I lived in silence, managing the symptoms and not knowing the true extent of what my diagnoses meant until 2011, when I found an EDS conference in the U.S.. As I entered that conference room, I discovered I wasn't alone in my journey, I found 500 people living with or treating Ehlers-Danlos and a sense of belonging.
"Never doubt that a small group of thoughtful, committed citizens can change the world; indeed, it's the only thing that ever has." Margaret Mead
Since I started my rare disease journey, the small group that I have found includes in our local Simcoe-Muskoka area 113 others living with EDS. We now have a new clinic for EDS in Toronto, local peer support group, patient education and education for medical professionals, all because of a small group of patients and medical professionals coming together to raise awareness. I hope you can join us on March 4th as we hope to change the world.
Tammy Stadt, former BCHC Staff member