Archive for the ‘Kids’ Category
Posted on October 14, 2016
By Mary Thomsen Courtesy of the Valders Journal The full calendar in the Schmitz kitchen does not quite paint the picture of a typical month for an active family, but every appointment helps the family get on with life. “My calendar, it probably looks like everyone else’s, only it’s not for sports,” Carol Schmitz said, […]
Posted on September 21, 2016
Thank you all for taking the time to come to UIC College of Medicine on 9/21/2016 to let us learn about EDS. We all really enjoyed the talk and learned how to diagnose this collagen disorder! We met children with Ehlers-Danlos-Syndrome to hear their stories. Members of the EDS Chicago Support and Awareness group presented […]
Posted on July 27, 2016
By Taylor Barth LINCOLN, Neb. — Ehlers-Danlos Syndrome is a disorder that only impacts about 1 in 2,500 people. According to the Ehlers-Danlos Society, it’s under and mis-diagnosed. For about a year, one Lincoln family has helped their son learn to cope with the syndrome. By sharing his story, they hope to help raise […]
Posted on June 29, 2016
By Ken Barhorst. Ten-year-old Jarrett Payne of Sidney has so far had an amazing career in swimming. And it’s been against all odds. The son of Jeff and Wendy Payne, Jarrett was diagnosed at a very young age with Ehlers-Danlos Syndrome. As explained in medical terms, Ehlers-Danlos Syndrome is a group of inherited disorders that […]
Posted on April 10, 2016
Alaska Ehlers-Danlos Syndrome Awareness Month Coloring Competition. Start Date: May 1, 2016 at 12:00 am End Date: May 31, 2016 at 11:59 pm Rules: Attached you will find a picture of a zebra bust that was designed and drawn by the artist Katie Zamudio, Doodlebug Coloring Books. Starting May 1, 2016 at 12:00 am […]
Posted on March 28, 2016
Dr. Neil Schechter presented “Chronic Pain in Children and Adolescents with EDS”.
Posted on February 24, 2016
The Hole in the Wall Gang will be hosting a Rare Disease Summer Family Camp June 2-5 at Hole in the Wall. Children with Ehler’s Danlos and their families will be eligible for this session. In addition we also will host a General Family Weekend in the spring and in the fall (4/22-24 and 10/21-23) that […]
Posted on August 10, 2015
This Cincinnati family has 4 members with Ehlers-Danlos. Their strong faith gives them courage to persevere. They believe their childrens’ challenges have helped them to grow and become better people. Amy Schulze and her daughter, Elizabeth, lead 2 support groups for EDSers. By Sue Kiesewetter, Enquirer contributor. FAIRFIELD TWP. – Seventeen-year-old Elizabeth “Wizzy” Schulze used to think being tired […]