Archive for the ‘advocate’ Category
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 […]
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.
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 […]
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 […]
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 […]
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 […]
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 […]
Posted on June 7, 2016
Watch the recording of this free webinar. Sponsored by www.bodysupportstore.com 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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