Kids with Ehlers-Danlos
Book Review: The Bendy Twisty Zebra by Kimby Maxson
Move over, Dr. Seuss! Make room on children’s bookshelves for The Bendy Twisty Zebra written by Kimby Maxson and illustration by Ron Houchens. With colorful characters, catchy rhymes, and a heart-felt message, The Bendy Twisty Zebra brings to mind some of Dr. Seuss’s famous books. While children of all ages (even grown-up children!) can enjoy […]
Cincinnati Children’s Hospital Connective Tissue Disorder Clinic Video
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.
Join Effort by Sending a Birthday Card to Jasmine, Turning 14 with Ehlers-Danlos Syndrome
You can help this courageous EDS girl have “the best 14th Birthday ever” by sending her a Birthday card. Include your encouragement, motivational songs, or positive story — to show her you understand the struggles of EDS. Her Birthday is August 31st, so get your wishes in the mail! Address provided below. __ Watch Jazzy’s story in […]
Triathletes Face Ironman Test to Help Boy with Ehlers-Danlos Syndrome
By Neil Metcalfe. Hugo Whatton is a 3-year-old with Vascular type Ehlers-Danlos Syndrome. His caregivers must be very cautious in handling him and preventing injuries which could be life-threatening. Kim and Alasdair Hutt of Laurel Avenue, Potters Bar, will tackle a 2.4 mile swim, a 112 mile bike ride and to finish off, they will […]
How Can Schools Better Understand Ehlers Danlos Syndrome?
The pressures from the school environment are difficult enough when a student is well. EDS students have more challenges than the average student,and need the cooperation of the school administration and teachers. By Jenny – Cheetahs In My Shoes “As both a parent of 2 children with Ehlers Danlos Syndrome (or if it isn’t, something […]
Single Mom Dealing with Ehlers-Danlos Syndrome
Ehlers-Danlos Syndrome makes it difficult for Kristina to accomplish daily living tasks. But, she has been refused disability benefits in Australia on the basis that her condition is ‘curable’. She has trouble driving to her doctor appointments without pain and dislocation. She wants to spread awareness by sharing how EDS affects her daily life. By: Margaret Burin (ABC […]
Roslyn’s Quest for a Service Dog to Assist with Ehlers-Danlos Syndrome
In response to one mother’s request for help, proposed legislation requiring insurance companies to provide coverage for the costs for service dogs will be considered by lawmakers in Hartford, CT. Roslyn is navigating the process of obtaining a service dog for assistance with her EDS needs. The community is rallying behind her! By Kathleen Schassler, The […]
Gabrielle’s Personal Battle with Ehlers-Danlos Syndrome
After being diagnosed with Ehlers-Danlos Syndrome, high-school student Gabrielle found comfort with members of the Young Life organization. She found purpose and motivation through her renewed spiritual connection. “Right after I got diagnosed with Ehlers-Danlos Syndrome (EDS) and figured out I could not play volleyball, I truly was devastated. I felt like I was missing out […]
