Archive for the ‘Kids with Ehlers-Danlos’ Category

blog-post-thumbnail
Jordan has Seen His Share of Hospitals.

Posted on January 12, 2013

Jordan is a brave young man. At nine years old he sees the need for giving to others, even while he is struggling himself with Ehlers-Danlos Syndrome. “Jordan Corvin, Saugerties boy brings joy to Columbia Memorial patients. Jordan suffers from Ehlers-Danlos Syndrome, a disorder affecting connective tissues that causes acid reflux and seizures. He goes […]

Read More

blog-post-thumbnail
Poppy Urgently Needs Her Intestines and Stomach Replaced

Posted on January 9, 2013

What an incredible story of a 5 year old girl who got to come home from the hospital for Christmas. How difficult EDS can be to even the youngest of our community!   Click picture for full article We welcome comments and Likes regarding this story

Read More

Welsh Government is Starting to Pay for EDS Treatment

Posted on January 7, 2013

It has been difficult in many countries, including the US, to get insurance and government agencies to pay for Ehlers-Danlos Syndrome treatment. Many doctors do not understand this disorder and most do not know how to treat this condition. This is a story of a successful result of a public appeal for a teenager with […]

Read More

If Your Child Moans About Sore Legs Dont Assume They’re Just Lazy

Posted on December 30, 2012

Merrily had problems with her joints.  She was eventually diagnosed with Hypermobility, a form of Ehlers-Danlos Syndrome. When Merrily, my ten-year-old daughter, complained this summer that the sole of her left foot was sore, I was surprised to find a large lump in the arch. Our GP put it down to ill-fitting shoes (she lived […]

Read More

If Your Child Moans About Sore Legs Dont Assume They’re Just Lazy

Posted on December 30, 2012

  Merrily had problems with her joints.  She was eventually diagnosed with Hypermobility, a form of Ehlers-Danlos Syndrome.       When Merrily, my ten-year-old daughter, complained this summer that the sole of her left foot was sore, I was surprised to find a large lump in the arch. Our GP put it down to […]

Read More

Make a Wish for Emily Hain from Salisbury, North Carolina

Posted on December 18, 2012

Emily Hain from Salisbury, North Carolina was given a send-off celebration in honor of her wish to go to New York City to see the Broadway Musical, “Wicked”. Emily is undergoing treatment for Ehlers-Danlos Syndrome, a disorder marked by extremely loose joints, hyper elastic skin that bruises easily, and easily damaged blood vessels. We welcome […]

Read More

Ontario EDS Student gets Live Saving Surgery

Posted on November 5, 2012

  MICHELLE RUBY | QMI AGENCY BRANTFORD, ON – A packed high school gymnasium in Brantford, Ont., erupted with applause Thursday morning as Erika Crawford walked in. Overcome with emotion, the 17-year-old was only able to speak a few words. “It means so much to me. I can’t get over what everyone has done for […]

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?

View Results

Loading ... Loading ...