Archive for the ‘Ehlers-Danlos Symptoms’ Category

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Study Indicates Postural Orthostatic Tachycardia Syndrome (POTS) Predominantly Affects Young Women

Posted on July 6, 2014

This UK study indicates that POTS patients are predominantly young, well-educated women. Approximately 1/5 were diagnosed with CFS and a similar proportion had Ehlers-Danlos Syndrome, suggesting that there may be an underlying overlapping cause, say the researchers. “A debilitating syndrome that causes an excessively rapid heartbeat on standing up, predominantly affects young well educated women, and blights their lives, […]

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Skydivers Fundraise for Toddler with Ehlers Danlos Syndrome

Posted on July 5, 2014

 On July 5th, supporters of this 3-year-old EDSer jumped at the chance to raise money for his medical equipment. Eleven people, including his mother, actually jumped from a plane! Skydivers are raising money for a toddler with two serious medical conditions. Fundraisers from Burnham and South Woodham are preparing to jump from a plane on Saturday […]

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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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Doctor Speaker Series – “EDS: A Dental Perspective” – Recording Available

Posted on December 5, 2013

Our presenter for December 4th was Dr. Carl Mentesana, DDS.                         His topic was: “EDS: A Dental Perspective“ Click Here for the recording Note: the presentation slides start after about 7 minutes into the program   Addendum to the Patient Q & A Question: Please post the […]

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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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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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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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