I am taking part in #MyEDSChallenge and #MyHSDChallenge with the Ehlers Danlos Society. Since May is EDS awareness month, every day I will be sharing something about myself and my EDS journey to drive further awareness and community.
Day 24- Country/State stats on EDS/HSD
It’s very hard to find state or country stats on EDS in the USA because I’m sure not a lot of doctors care to measure them. For the share today, we can see all the types of EDS. As you can all see, Hypermobile EDS and hypermobility spectrum disorder make up the majority of the cases you hear about. The other types which have genetic testing only make up very small numbers. These other types are truely rare diseases.
Really hoping to see the numbers adjusting over time as they take more surveys. I keep hearing people say they think EDS is the new “trendy thing”. We are hearing about it more and more because more people finally have a name for what’s been going on with them and are coming forward. In 20-30 years hopefully we see more types being discovered too. Hopefully Ehlers Danlos will be as well known and well talked about as other diseases.