Archive for the ‘Coping Techniques’ Category
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 […]
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 […]
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 […]
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, […]
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 […]
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