What’s up with EDS?
1. It’s a rare genetic connective tissue disorder named after two dermatologists who each wrote about patient who had skin that was hyperextensible—super stretchy.
2. It’s a collagen disorder. Since collagen is in almost every organ, tissue, and system, they can all be affected. That means the pain is chronic, often excruciating, and exhausting. (And no, taking collagen doesn’t solve the problem because our bodies take the collagen from what we eat and drink to build the collagen we need, but EDS bodies build it incorrectly.)
3. It’s genetic, but not all affected family members share exactly the same symptoms (though they will have the same subtype). It’s also much more commonly diagnosed in women—hormones may affect gene expression.
4. There are 13 subtypes, each with its own problems and prognosis.
5. Getting diagnosed. Studies show that it takes the average EDS patient 19 years (yes, 19 years!) to go from showing symptoms to diagnosis. It took 37 years for me to go from symptoms to diagnosis. Partly, it’s because EDS is so rare most doctors haven’t seen a patient with EDS. The 2017 estimate is that somewhere between 1 in 5,000 to 7 in 1,000 people have the type of EDS that I have.
6. Why is a zebra the mascot for EDS? Doctors are taught when you hear hoofbeats think horse not zebra. After all, it’s pretty rare to find a zebra. But they exist—and so do people with EDS, even though we’re few a far between. 😊