Archive for the ‘Managing Ehlers-Danlos’ Category

A personal account of an EDS journey

Posted on December 1, 2012

This is Russell David Lewis’ story about his journey with EDS Hypermobility Type.  He has had many challenges along the way, but now is in a better place due to his eventual diagnosis. “By: EDSHTDavid Written on October 3rd, 2012 My name is Russell David Lewis. I have Ehlers Danlos Syndrome – Hypermobility Type (formally […]

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Learning to Live with Ehlers-Danlos

Posted on November 25, 2012

This young lady was diagnosed in 2009 and is sorting out what is important in her life.  She has some good ideas for productive and positive activities to do when EDS has given you some extra “down time”. “It has been a while, and things are not looking good. I have been bedridden for over five […]

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Kristin Means Benefit for Medical Funds – and a surprise!

Posted on November 18, 2012

Kristin Means is featured in our Home page video as she is interviewed with Dr. Henderson. Here is an opportunity to thank her for all that she does for EDS awareness. “Kristin Means, 31, with her father George Feracco is thrilled Saturday as she finds out that there is a 2013 Chrysler Town & Country van waiting […]

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Ontario EDS Student gets Live Saving Surgery

Posted on November 5, 2012

  MICHELLE RUBY | QMI AGENCY BRANTFORD, ON – A packed high school gymnasium in Brantford, Ont., erupted with applause Thursday morning as Erika Crawford walked in. Overcome with emotion, the 17-year-old was only able to speak a few words. “It means so much to me. I can’t get over what everyone has done for […]

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Talking to Someone with a Chronic Illness

Posted on October 15, 2012

  Editor’s note: Lisa Copen is the founder of Invisible Illness Awareness Week. She has lived with rheumatoid arthritis for nearly 20 years. She spends her time encouraging others who live with chronic illness or pain through her organization, Rest Ministries. (CNN) — When people we care about are in pain, we want to offer […]

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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 […]

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Everyday EDS

Posted on May 30, 2012

Paula has EDS and describes, in her own words, what it is like to deal with this disorder. She is a brave lady who keeps a positive attitude while managing Ehlers-Danlos Syndrome. Check out EDS – Every Day Syndrome – by Paula Dixon Click here to read more about Paula.

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