Archive for the ‘Chiari’ Category

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Free Webinar – “Tethered Cord Syndrome in Ehlers-Danlos” – Recording Available

Posted on January 5, 2016

Watch the recording of this free webinar. Sponsored by www.bodysupportstore.com TOPIC: “Tethered Cord Syndrome in Ehlers-Danlos” PRESENTER: Petra Klinge, MD, PhD Click IMAGE  for a link to this recording Click here for a link to the presenter’s slides INVITE YOUR FRIENDS: Spread the knowledge!  Please post this announcement on Facebook, and forward this invitation to others who may […]

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EDS & Chiari “Unite@Night” Walks in Ohio

Posted on May 31, 2015

The May 30th Ehlers-Danlos / Chiari walk in Cincinnati, OH had an over whelming response! In addition to our group members, the walk attracted more than 75 new EDSers and families! Please join us in June for several walks throughout the country!

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Music Therapy Helps 11-year-old Battle Ehlers-Danlos and Chiari Malformation

Posted on July 3, 2014

The OPUS hospital music program helps James cope with Ehlers-Danlos pain. In addition, a recent study showed 29% lower anxiety levels and a lower average breathing rate in patients who were played music during their operations. Click here  to watch videos demonstrating how the OPUS music therapy program is helping patients. By Dan Russell,  Nottingham Post. “MUSIC is helping an 11-year-old boy […]

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Chronically in Pain and in Love – POTS and Ehlers-Danlos Syndrome

Posted on February 10, 2014

The diagnosis was bittersweet. It was good to finally have an answer …. Ehlers-Danlos Syndrome! By Emily McComas CHARLESTON, W.Va. — Kyli Wolfson was losing hope. “For most of her life, she had struggled with a lack of energy. She couldn’t keep up with her peers in middle school gym class and tried to work with […]

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Dr. Francomano Video: Ehlers-Danlos’ Affect on Multiple Body Systems

Posted on November 13, 2013

Don’t miss these videos! Dr. Francomano, EDS expert, talks about Ehlers-Danlos as a multi-dimensional disorder that can profoundly affect quality-of-life.  She describes how EDS affects multiple body systems–musculoskeletal, neurological, dermatological, cardiovascular, gastrointestinal, and immunological. She discusses pain, fatigue, autonomic dysfunction, and much more. Chiari, Fibromuscular Dysplasia, CVID, and Mast Cell Activation Disorder are also mentioned. […]

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