Support For Friends of Hypermobiles/ EDSers

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A new, closed, Facebook group is available for support of friends who are caring for, supporting or living with people who have hypermobility/ EDS.

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If you meet these requirements you can join at www.facebook.com/groups/friends.of.hypermobiles.

NOTE: no EDSers will be admitted to the group, it is for support people only so that they have some freedom to vent and be candid, sorta like al-anon for an alcoholic’s loved ones.

The Group’s Mission Statement

“This group is for support of adults who have hypermobiles/ EDSers in their lives and act as friends, caregivers, supporters and are looking for support for themselves. NO hypermobiles/ EDSers will belong to this group, this is for support people only. If you are the parent of a younger EDSer, remember that this page is NOT for medical discussions, but for support to your caring for a special needs child.
We hope this page is a safe place to ask questions, vent, and support one another. We will post some concrete medical facts and weigh in about the condition as needed for clarification and better understanding of what your loved ones are going through. Please read the first “pinned” post for explanation and scroll down to take the poll identifying what you hope to gain for the group once accepted.

If you are only looking for medical facts we suggest you look at bigger mainstream groups like the www.EDNF.org or http://www.edsawareness.com to read more about this condition.

Posts must be in English and pertain to the topic. Random cartoons, other issues and non-EDS fundraisers can be posted on your own walls. No commercial ads or requests will be allowed. Since we can only screen so well, we recommend you post with that in mind. No medications or doses should ever be posted, and sharing personal information is at your own discretion. Please do not use the full name of your EDSer for their safety and privacy, just use initials or first names only with no links through Facebook to their identity.

Foul language and bashing will not be accepted and those comments will be deleted.

This page is not a replacement for crisis help, or for professional mental or physical healthcare and we recommend that you see a counselor on your own or with your EDSer if you live together and relationships are strained to the danger or risk of either one of you.

You will be screened in and we will need to know:

1) That you do not have hypermobility or EDS yourself,

2) How you are related to the person you know with the condition,

3) That you will show respect and keep the privacy of those you meet and connect with through this group.

After you request to attend this group you will receive a personal message screening you into the group so please watch for it in your inbox or “other” box. Your application will last a week then you’d have to request again, we will get back to requests within 48hrs in general.”

Please encourage those caregivers needing support to join this Facebook site at:  www.facebook.com/groups/friends.of.hypermobiles

 

We appreciate your Likes and Comments

  • Glori Byrd

    I may possibly be and EDS’er, however, I am also a mom and caretaker for my daughter who has EDS more significantly than I. I would like to have support in dealing with a teenager with EDS. Let’s face, they have hormone and attitude issues etc. They also like to hide that they are in pain.

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