Archive for the ‘advocate’ Category

Activities at the EDS Society Conference in Las Vegas 9-6 thru 9-8

Posted on September 11, 2017

We participated again in a very successful EDS Learning Conference. Here are connections to activities at the EDS Society Conference in Las Vegas 9-6 thru 9-8             New EDS Physician CME Educational Online Program announced   Click here for Jon Rodis EDS Society Conference Summary Click here for Dr. Chopra’s presentation […]

Read More

Boston Walk to Support Marfans/EDS Research

Posted on June 18, 2017

By  John Lynds, Times Staff: Just before she turned 3-years-old, Beth Villani’s daughter, Hannah was diagnosed with Ehlers-Danlos Syndrome. “Our daughter was diagnosed in January at just age 2 years and 10 months,” said Villani. “I will be honest and say that hearing that news broke my heart.  When the doctor told me we would […]

Read More

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.

Read More

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 […]

Read More

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 […]

Read More

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 […]

Read More

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 […]

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?

  • >20 years (53%, 2,803 Votes)
  • 10-20 years (17%, 927 Votes)
  • 2-5 years (13%, 665 Votes)
  • 5-10 years (12%, 653 Votes)
  • 1 year (5%, 264 Votes)

Total Voters: 5,312

Loading ... Loading ...