Archive for the ‘Inspiration & Humor’ Category

Chair-bound Bride with Ehlers Danlos Syndrome Walks Down the Aisle

Posted on October 25, 2014

Natalie’s joints dislocate up to 300 times a day, but she achieved her dream by walking down aisle on her wedding day.     Natalie Allan, 24, is thought to be the only person in the UK to suffer from the rare form of 7A Ehlers Danlos syndrome. The progressive condition, commonly known as EDS, causes […]

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Jazz Pianist, Noah Baerman, Prevails Even with EDS Pain

Posted on May 6, 2014

 Pianist and composer Noah Baerman has faced adversity. He is determined to respond with his talented music for all to hear. By OWEN McNALLYS. “There have been challenging times earlier in his life when the gifted Connecticut pianist and composer Noah Baerman almost had to give up playing the piano because of the debilitating pain he […]

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Ehlers-Danlos Did Not Prevent Toni Pearce From Achieving Her Goals

Posted on March 26, 2014

Toni Pearce’s first campaign focused on improving accessibility for disabled people in her college.  This led to her position as president of the National Union of Students – representing 7 million students! “Toni Pearce is the president of the National Union of Students and the first person to hold the post without gaining a degree. Here […]

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“Stand up” for Ehlers-Danlos Awareness – A motivational message…

Posted on May 24, 2013

It’s May 2013, and Ehlers-Danlos Awareness Month is here again.  This EDSer will motivate you to spread awareness in your sphere of influence. If each one of us speaks up whenever we can, it will make a difference. We encourage you to stand up for EDS all year long. Published by Beth “It is May again; time […]

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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 […]

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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 “ 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 […]

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Explaining Disability​ – Part of What Makes Us Disabled

Posted on January 23, 2013

Author: Jonathan  Rodis President-Massachusetts  Chapter of the National Marfan Foundation Head-EDS Massachusetts  and New England Support Group       “I wanted to share with you something I wrote to  help everyone understand what it is like to be disabled, what it is like to  have an invisible disability, what to do if you find […]

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How long until you received a proper diagnosis for EDS?

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