A Family Dealing with Ehlers-Danlos Syndrome

Many families are struggling with the pains of EDS. They are trying to educate themselves and their practitioners. They do not know where to find support. This is a story of a particular family dealing with this disability.

“We moms of EDS kids have a difficult task and a huge responsibility when making these decisions – I know I often feel totally out of my league. I have no medical degree – how am I supposed to make these decisions? Especially when I have been made to feel stupid for taking her to the ER for what I thought was good reason but the doctor saw nothing of concern. We are between a rock and a hard place for certain and our lives would be so much easier if the medical community knew a little (a lot) more about EDS and didn’t leave us to make all of these tough decision on our own. To me, this is the absolute hardest part of dealing with EDS on a daily basis – to be responsible for making medical decisions that I am not remotely qualified to make is absolutely terrifying.”

Caregivers for EDS sufferers experience pain, too. The pain of not knowing how to best help their loved ones and give them the support they need. Learn more about EDS.  Share this knowledge with others.

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