In the United States, a rare disease is defined as one with an incidence rate less than 1:200,000. Rare diseases affect men and women of all ages and walks of life. Nothing about a rare disease is fair and convenient.
Having a rare disease makes you feel like you’re an alien that no one understands. But rare disease activism is doing away with that. Despite the fact that I’ve been diagnosed with this rare disease — Ehlers-Danlos syndrome (types 3 or 4) — I’m not alone. I’m part of a large community of folks around the world with rare diseases and their supporters. Somehow, not being alone in the fight? That makes a huge difference.
Most rare diseases are genetic, and one pretty cool thing about rare disease activism is that the awareness ribbon for rare disease is the blue jean (gene) ribbon. Like this:
Between the blue jean (gene) ribbon and the zebra ribbon for EDS, I think I’ve got some pretty cool ribbons.
A few months ago I received a package in the mail:
Inside was a beautiful beaded bracelet made by Kylee of Cure-A-Cause and my very own blue jean awareness ribbon. I’m wearing it today in support of all those with rare diseases. Kylee: that means you too!!
so blessed to be part of a community,