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.

Click here to visit the original source of this post

5 thoughts on “A Family Dealing with Ehlers-Danlos Syndrome”

  1. Jim Giessler says:

    This is a comment to the website owner. I am sure all will be interested.

  2. Software says:

    Magnificent web site. A lot of useful information here. I am sending it to several friends ans additionally sharing in delicious. And of course, thanks on your sweat!

  3. Genevie Hayer says:

    Fairly excellent blog post. Document only came on your current weblog and additionally needed to talk about i need truly really liked studying your own blog site articles. Even so I am going to come to be following for the wesite and additionally I really hope you will write once again quickly.

  4. Sondra Alequin says:

    This is such a great resource that you are giving and you present it apart for absolutely free. I love finding websites that have an understanding of the importance of providing a excellent aid for cost-free. It might be the old what all over happens around habit …

  5. free proxy websites says:

    When I first saw this title A Family Dealing with Ehlers-Danlos Syndrome | EDSAwareness.com on google I just whent and bookmark it.Hi! I’ve been reading your website for a long time now and finally got the courage to go ahead and give you a shout! Just wanted to tell you keep up the great work!

Leave a Reply

Your email address will not be published. Required fields are marked *

Get Webinar Announcements And Our FREE Guide

Support EDS Awareness

See all upcoming events

Current Poll

How long until you received a proper diagnosis for EDS?

View Results

Loading ... Loading ...
%d bloggers like this: