Archive for the ‘advocate’ Category

Living with Ehlers-Danlos Syndrome – Safety Tips

Posted on December 5, 2016

By Ellen Lenox Smith
Living with Ehlers-Danlos syndrome (EDS) is a lifelong process that requires constant monitoring on how to remain active, yet also physically secure and safe. In this article, Ellen shares some safety tips that she hopes will help others with EDS.

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Craniosacral Therapy and Ehler-Danlos Syndrome

Posted on December 2, 2016

By: Eloise Stager, BA, LMT, CST   Introduction Ehlers-Danlos Syndrome (EDS) is a genetic, connective tissue disorder affecting collagen production. Since collagen is found throughout the body, all systems, structures and biomechanics can be affected. The most noticeable physical manifestation is joint hypermobility as described by the Beighton Criteria (6), a scoring system for joint hyperflexion […]

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The Hidden Struggles of Living with Ehlers-Danlos Syndrome

Posted on November 21, 2016

Katelyn Verstraten, Online Reporter.   Ehlers-Danlos Syndrome is just one of many invisible illnesses that dramatically alter the course of the patient’s life. At 18, Catherine Richardson’s life was all planned out: she was getting amazing grades in her first semester of university, pursuing her dream of being an occupational therapist, and working part-time as […]

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Successful Ehlers-Danlos Hoofbeat Run Walk-N-Roll in King Ferry, NY.

Posted on August 13, 2016

Staff writer Gwendolyn Craig Thank you to all who participated in, volunteered at and donated to the Ehlers-Danlos Hoofbeat Run Walk-N-Roll on August 6th. KING FERRY — Elizabeth Shaw loves to swim, bike and practice CrossFit. She has cycled around every Finger Lake, and for about three years, she has been a local personal trainer, helping […]

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Ehlers-Danlos Will Not Keep Him From Trying to Win The Voice

Posted on July 25, 2016

by Beatrice Credi “I would love to have seen the joy in your heart and have seen the hope of the first time in your eyes.” These sweet words were written by Benjamin Arasl, an adolescent in France who, through his song, tells the story of the love that he hoped to be able to […]

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EDS: In Your Head?

Posted on June 24, 2016

Brittany (and her support group) has entered a short film contest to raise awareness of Ehlers-Danlos Syndrome and Mental Health.  They are now FINALISTS! To support the effort, please share, watch and re-watch this video through July 7! If  they win, they will receive a $2,000 grant to make a longer film on EDS and […]

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Free Webinar — “All in Your Head”: The Problem of Psychogenic Diagnosis for Ehlers-Danlos Patients – Recording Available

Posted on June 7, 2016

Watch the recording of this free webinar. Sponsored by    TOPIC: “All in Your Head”: The Problem of Psychogenic Diagnosis for Ehlers-Danlos Patients PRESENTER: Diane O’Leary, PhD   Dr. O’Leary is currently an Associate Adjunct Professor in philosophy at University of Maryland University College Click IMAGE for the recording of this presentation. Click here for the […]

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Can raising awareness ever be detrimental?

Posted on January 22, 2016

Published by Ziggy’s Wish Lara Bloom: Every cause needs awareness. Sometimes communities forget that the cause is represented by many different faces, experiences and stories and, when awareness of the condition or issue they are living with is not represented in the way that they can relate to, they can react negatively. I experience this […]

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Current Poll

How long until you received a proper diagnosis for EDS?

  • >20 years (53%, 2,803 Votes)
  • 10-20 years (17%, 927 Votes)
  • 2-5 years (13%, 665 Votes)
  • 5-10 years (12%, 652 Votes)
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