Ehlers-Danlos Syndrome Support Group

Ehlers-Danlos syndrome is a group of rare genetic disorders caused by a defect in collagen synthesis. Depending on the individual mutation, the severity of the disease can vary from mild to life-threatening. Common symptoms are unstable, flexible joints with a tendency to dislocate and subluxate, and elastic, fragile, soft skin that easily forms welts and scars.

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AlissaP 12/03/2016

Hi everyone,

I am looking for ways to help a loved one with EDS. I know she is in a lot of pain, but whenever I ask what I can do to help she says she is all set. Is there anything your family/ friends have done or you wish they would do? From my research I know that EDS affects each person differently, so there wont be a "one size fits all" answer, but any suggestions you have would be greatly appreciated!

Thank you!

bulldog 12/21/2016

Can I ask how old this person is ?

AlissaP 12/23/2016

Early 50s

Beautifully-Broken 08/15/2017

Seems not many people active in this forum, not sure you'll see this msg. But really, just what your doing. be understanding. not pushy. help out with day to day things, simple chores are hard to keep up with when your body is hurting.
Thanks for caring enough about your loved one to seek advice.

GumbyGirl 09/29/2017

Sometimes family will smother you when all you want is to be is left alone. Sometimes family will get in your business and then "share" all your personal info with neighbors and other family members. Sometimes family will try to control and manipulate those that are ill because they think they can.

I don't know you or your daughter and this is a very old thread - I'm just playing devils advocate as I am a daughter that moved over 1,000 miles away as sick as I am just to get out of the grip of the noose. Maybe your situation is nothing like this, and maybe someone else will see this and it was meant for them.

OP I wish you the best, your very kind to care (((hug)))

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