Does any have a rarer type of EDS?

Hi, !

I do NOT have EDS, but I do have a friend with EDS and two of her children were diagnosed with it as well. Their EDS is the more "typical" kind, if you can say that about a rare disease like EDS. I am aware of other forms of EDS, including vEDS and kEDS. I don't know if you have found the Ehlers-Danlos Society, but they have some great information on all forms of EDS and you might find their website helpful -- https://www.ehlers-danlos.com/. One of our former health leaders has written a fair amount about her EDS on this site and here is just one of her pieces -- https://raredisease.net/living/little-things-add-up. And here's another piece about staying informed when you have a rare disease -- https://raredisease.net/living/staying-informed-advocacy. The author also deals with Dysautonomia, like you. It's not uncommon for people with EDS to also be diagnosed with Dysautonomia.

Have your doctors given you any idea as to what treatment options they might want you to try first? I know with EDS, it's more about managing your health and trying to avoid the problems that can come with hypermobility. But, there are options like physical therapy and managing symptoms that pop up, like pain. There are some options for Dysautonomia and your doctors will hopefully discuss those options with you.

I do hope you are dealing with common EDS, though, please know there are people living with other forms of EDS and in this digital age, it's easier than ever to find people living with EDS and connect with them.

Please don't hesitate to reach out if you have more questions. We're happy to help in any way we can!

Best, Erin, Team Member.