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Ehlers-Danlos Syndrome Online Support Group

New Member Introduction

#1

My name is James. My fiancee soon to be wife has EDS and I am just reaching out for any type of support here. She can’t hardly make it to the bathroom without falling anymore. She has three types of eds and they are all the most progressive and aggressive cases the doctors say they have ever seen. It’s tough caring for someone who is in constant pain. I love her and care alot about what this group might hold in store for us. thank you

#2

Hello James. This new site layout is a little confusing for me but you can send me a message any time with your questions. I have EDS and have suffered a lot but with the support of my spouse, I manage. My spouse and I would be happy to do what we can to help you guys.

#3

Thank you Michaela.I was wondering. I’m looking for activities that I might be able to get Monica interested in, help get her mind off herself for awhile. Is there anything you enjoy doing? Something not too strenuous as my wife can hardly walk anymore?

#4

Hi I’m Abby,
Use to be on this site several years ago. I have Chiari, Eds, and Dysautonomia or pots.
My oldest daughter also has Eds, not Chiari that we know of. She may have pots. Our youngest has a lot of issues that are very familiar with Eds.
Glad to meet others who are going through the same issues.

#5

And we’re glad to have you here, Abby!
Seenie