If you were at a cocktail party and someone happened to mention they have Ehlers-Danlos syndrome, how would you respond? Would you deftly swirl the wine in your glass, pretend there’s a fly in it, and go get a replacement? Or would you ask them to explain to you what it’s like living with a condition you’d never heard of?
I’d go for the second choice and chalk up my ignorance to the fact that so few people outside of the EDS community could provide an accurate definition for this rare disease.
So, before I go any further, I’ll fill you in.
EDS is an umbrella term for a number of connective tissue disorders—the most common type causing hyper-mobility of the joints, and the least common, but most severe, affects the vascular system and can lead to early death.
There are six major types and each one carries its own diagnostic criteria. An inherited genetic disorder, EDS is thought to affect 1 in every 2,500 to 5,000 people, and there is no cure. Treatments can help ease symptoms, and preventative care is also helpful.
The Ehlers-Danlos Society was founded in 1985 not only to help elevate awareness about EDS, but also to provide resources and support for those living with EDS. They organize medical symposiums, provide literature to the EDS community, and are striving for the day when a cure can be found.
If you’re interested in hearing a story from someone actually living with EDS, click here.
