Archive for the ‘Community’ Category

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Bruising Can Be a Manifestation of Ehlers-Danlos Syndrome

Posted on September 17, 2013

Ehlers-Danlos Syndrome patients may be sensitive to bruising due to fragile capillaries and blood vessels surrounding the connective tissues. This story tells more about this symptom. by Pavitra Sampath “Mysterious bruises have been appearing on my legs for a while now, mostly on my thighs, but also on my calves. Sometimes they appear and I can […]

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National Champion Figure Skater John Coughlin is an Ehlers Danlos Syndrome Supporter

Posted on September 15, 2013

John’s mother struggled with pain and was finally diagnosed with Ehlers-Danlos Syndrome. The Ehlers-Danlos National Foundation (EDNF) is pleased to announce that U.S. pairs figure skater John Coughlin has become a public supporter of the organization. Coughlin lost his mother to Ehlers-Danlos Syndrome (EDS) in 2010, and he is committed to raising awareness and increasing support for […]

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EDS Support Group in Lancaster

Posted on June 10, 2013

This EDS Support Group  is promoting EDS Awareness in Lancaster. By EMILY PEIFFER   Staff Writer        epeiffer@lnpnews.com “You may notice something different when you pay for your morning coffee at  Turkey Hill. Donation jars for Ehlers-Danlos Syndrome, a rare genetic  disorder, are now at the checkout counters of four local Turkey Hill  markets. The driving force behind […]

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Attention Doctors: An EDS Patient’s Bill of Rights

Posted on June 6, 2013

Many EDS patients are struggling to get their doctors to understand their condition.  This “Bill of Rights” is a tool that may help EDSers communicate with doctors. By     an_angel_with_wings “The purpose of this Bill of Rights is not to be combative or argumentative. I have experienced all of these things during the time that my […]

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12 Ways to Help a Nauseous or Unhappy EDS Stomach

Posted on June 5, 2013

by Yvette Thomas If you have Gastrointestinal problems that frequently accompany EDS, here are some helpful suggestions from an EDS Support Group member. (Always consult your doctor first.) 1. Small meals always. Try not to go a long time in between eating. Always carry a little snack with you. Something protein-based like string cheese or nuts. […]

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Hannah’s Cartoons Improve Communication

Posted on May 18, 2013

Hannah spreads EDS awareness through her creative cartoons. Her Stickman booklets and information cards have enlightened and entertained many readers. They have provided an alternative way for EDSers to express their needs. “Hannah was diagnosed with HMS aged 24, having been symptomatic all her life. She did well in school and university, but a year […]

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Hypermobility “Stick Men”

Posted on April 13, 2013

Enjoy the creativity of this EDSer who gets her message across with “stick people” stories, communication cards and signs.     At times we need a little humor!  Hannah from the U.K. has found an effective way to explain EDS symptoms & needs to the public in a casual and light-hearted tone.     Click […]

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When EDS Strikes Families

Posted on April 5, 2013

By Sandra Strege-Mims Barr,  PhD. Sandra Leads the Ehlers-Danlos Syndrome Local Support Group in Dallas, TX. We will be looking today at the impact that a diagnosis of Ehlers-Danlos Syndrome has on a couple or a family. Most families proceed through day after day earning money from one or two incomes, using that money to […]

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