Archive for the ‘Coping Techniques’ Category

blog-post-thumbnail
Hypermobility “Stick Men”

Posted on April 13, 2013

Enjoy the creativity of this EDSer who gets her message across with “stick people” stories, communication cards and signs.     At times we need a little humor!  Hannah from the U.K. has found an effective way to explain EDS symptoms & needs to the public in a casual and light-hearted tone.     Click […]

Read More

blog-post-thumbnail
Being Your Own Advocate

Posted on February 22, 2013

Author: Jonathan  Rodis President-Massachusetts  Chapter of the National Marfan Foundation Head-EDS Massachusetts  and New England Support Group “Wow..how many times have you or loved one or a friend been told something totally wrong about your condition from a doctor?  Of course, I know the answer…many, many, many times. The worst imaginable place to hear it […]

Read More

blog-post-thumbnail
Dana Describes Her Journey with POTS

Posted on January 26, 2013

Hello everyone! My name is Dana and I suffer from POTS (Postural Tachycardia Syndrome). I decided to create this channel to reach out to others who have this disorder too. About me: I have had POTS since I was 16 years old. I am now 28. (Had a birthday in April) I tend to have […]

Read More

blog-post-thumbnail
“No Matter What’s Going on With My Brain There’s Always Music in My Head.”

Posted on January 18, 2013

The Bellmawr resident writes edgy, melodic rock songs with titles like “Palinopsia,” the name for an optical disturbance that’s among the debilitating symptoms of Ehlers-Danlos Syndrome.About four years ago, Fatale was diagnosed with the connective-tissue disease, which creates havoc in the joints, spine, and elsewhere. After surgeries left her barely able to move her head, […]

Read More

Practical Parenting Tips for those with Physical Limitations

Posted on September 20, 2012

by Jennie Macdonald  As someone who suffers from two chronic illnesses (Ehlers-Danlos Syndrome and Postural Orthostatic Tachycardia Syndrome) that include fatigue and joint pain as my two major limitations, I understood the extreme need to be efficient with my time and energy in my early years of parenting. For me, a main priority was to […]

Read More

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 ...