Ehlers-Danlos (and all related disorders) Support Group

Welcome to our amazing herd! Whether you have EDS or another related disorder, love someone with them or just want to learn more this is your spot. Thank you for supporting our group. It was created after seeing so many groups having in-fighting and medical suggestions not allowed. The administrators for the group are Danette Hillier-McVeety & Stacey Simmons

Due to circumstances in other groups, we feel the need to write this disclaimer to protect the administrators and the group members legally. By posting in this group you are agreeing to the stated terms:

1) Any advice given is NOT official medical advice. Often members will offer suggestions of what helps them. Any suggestions need to be discussed with your appropriate health care prescriber. Before trying any supplements or vitamins make sure your doctor order a baseline blood test and confirm that a supplement is okay. We often view supplements as harmless but as EDSers we need to keep in constant monitoring of our levels.

2) We ask that no doctors that you dislike be mentioned by name. There is a file if you want to share the name, speciality and location of a good doctor, who is willing to take on more EDSers.

3) The admins love this group and get such pride about being able to help others. We are so proud of the close bond members have formed and do not want to lose that. For this reason we ask that other groups not be posted here. Regional groups or specific condition groups are okay but please ask first.

4) We welcome new members and like to personally welcome them to our group. You are welcome to invite friends to the group but an Admin has to okay that. If you want to invite a friend please do so but also send a quick PM to an Admin that you know them. We Admins do a basic look at profiles to make sure the new users are genuine.

5) We encourage everyone's ideas and different views can be debated here. It enlightens all of us and makes us think which is only good. However debates need to be respectful. No topic is off limits here. If you see a post that upsets you or offends you please send an Admin a PM and we will look into it. If the post is more adult in nature, please write a disclaimer in the post then write your question as the first comment.

6) No one can copy any information / conversation within this group without the permission of the member(s) involved AND the administrators. This group will remain a place where all members feel secure to express anything they wish and to ensure this continues, everything shared here is confidential. General knowledge gained from the group is encouraged to be shared.

7) Please take note of the "If You Need Help" file. In it includes some group members who are willing to talk on the phone if you are having a bad day as well as official support line numbers and websites. Depression is linked so tightly to EDS that it is inevitable to bad days. If you are feeling very depressed or suicidal please reach out for help!