Archive for the ‘Kids’ Category

Posted on June 23, 2022
For our July newsletter, journalist Karina Sturm spoke with Donna Sullivan, board member of The Coalition Against Pediatric Pain (TCAPP). Sullivan lives with EDS and has several affected children as well. In this interview, she shares with Chronic Pain Partners her decade-long experience working with families accused of child abuse due to a medically […]

Posted on July 28, 2020
Cincinnati Children’s Hospital has a Connective Tissue Disorder Clinic helping children with Ehlers-Danlos Syndrome. This video celebrates the hospital’s impact on children and their families.

Posted on August 27, 2018
By: Hillary Floren Posted: Aug 14, 2018 06:48 AM MDT EL PASO, Texas – Ryan Dolliver is like most 3-year-old boys. He loves to play with his sister, laugh, destroy things and he can be mischievous. Ryan has a great smile, and when he laughs it is infectious. He has no clue he is living with […]

Posted on February 21, 2018
No More Monkey Bars: A 13-Year-Old’s Journey With A Rare Genetic Condition by Isabella ‘Kitty’ Yim An email from Louis DeLauro, a middle school teacher at the Grey Nun Academy in Yardley, Pennsylvania. He wrote: “Isabella Yim is 13 years old and is a star in my Language Arts Classroom. All of us found her […]

Posted on February 25, 2017
By KYLE GRABOWSKI @kylegrbwsk NORTHAMPTON — Hannalise Rivera-Lovett jumped to intercept a pass. She was playing in a summer league basketball game at JFK Middle School between her sophomore and junior seasons to stay fresh for the winter. Everything above her knee went one way, everything below went the other. The torque caused a subluxation […]

Posted on January 29, 2017
Our free EDS Awareness program provides each group with a listing on the Support Group Directory and Map, free webpages, coaching, and more… EDSawareness.com offers FREE Educational Sessions twice/month! To receive webinar announcements via email, Click Here To watch video RECORDINGS of previous presentations, Click Here

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 […]