My name is Jordi and my girlfriend has EDS it is extremely debilitating for her. I am trying to understand her condition better so I can help her to the best of my ability. Is this group only for people who suffer from EDS? I apologize for my ignorance. I’ve never done anything like this before and I just want to be as supportive and understanding as I possibly can to my partner.
Hi Jordi,
Thank you for your comment and your desire to be a supportive and understanding partner. That’s just as important as good medical care. I did a quick Google search, and there’s an EDS support group in NYC: http://eds-nyc.com/ It looks like they might have some good resources or someone you can contact directly. If you’re on Facebook, the group Ehlers Danlos & Hypermobility Spectrum EDS & HSD Wisconsin is great, and you don’t need to live in WI to join (or, at least, you didn’t when I helped run the group.) I know there are caretaker and family resources out there. The Ehlers-Danlos Society has a virtual support group for partners and spouses: https://www.ehlers-danlos.com/virtual-support/ Please reach out if you need more help!
Hello,
My name is Jordi and my girlfriend has EDS it is extremely debilitating for her. I am trying to understand her condition better so I can help her to the best of my ability. Is this group only for people who suffer from EDS? I apologize for my ignorance. I’ve never done anything like this before and I just want to be as supportive and understanding as I possibly can to my partner.
Hi Jordi,
Thank you for your comment and your desire to be a supportive and understanding partner. That’s just as important as good medical care. I did a quick Google search, and there’s an EDS support group in NYC: http://eds-nyc.com/ It looks like they might have some good resources or someone you can contact directly. If you’re on Facebook, the group Ehlers Danlos & Hypermobility Spectrum EDS & HSD Wisconsin is great, and you don’t need to live in WI to join (or, at least, you didn’t when I helped run the group.) I know there are caretaker and family resources out there. The Ehlers-Danlos Society has a virtual support group for partners and spouses: https://www.ehlers-danlos.com/virtual-support/ Please reach out if you need more help!
Best,
Kate