Searching for groups providing aid to disabled, EDSers

Many people are trying to find support and guidance after being diagnosed with Ehlers-Danlos Syndrome.  The following post is a good example. Direct them to  or … we can help! 


“I received this email from a mom who was diagnosed with a serious disorder after the birth of her child. She needs help doing small things around the house, such as cleaning the floors and bathrooms, and taking her and her son to the park.

But with mounting out-of-pocket medical bills, she can’t afford a regular cleaning service or traditional help. She’s wondering if there are any volunteer groups that might lend people like her a hand.

Here’s what she wrote:

I am a new mom who, after giving birth, my physical condition started to deteriorate. I was finally diagnosed at Duke with EDS, Ehlers-Danlos Syndrome Type 3. My question is are there any programs in the area that come into the home that help someone in my position that aren’t expensive?

I looked at cleaning services just to come once a month and with the amount of medical out of pocket we are paying even with insurance, things are very tight. I didn’t know if there were volunteer organizations that could help get me and him to the park [or help complete] the only chores that are getting very difficult … the floors and the bathrooms. … I have posted on bulletin boards. I have searched for home health volunteers. No medical knowledge is needed, just help during the day so I can be the wife and mother I want to be. I am trying very hard to keep my head up and I do have a wonderful support of some family and friends, but they have full lives of their own. I never imagined it would get this bad …

I don’t know of a non-profit that might provide this kind of help, but I thought I’d throw it out there.”

EDS Awareness support groups advocate for those with Ehlers-Danlos Syndrome … we can help get you connected!

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