Archive for the ‘Kids with Ehlers-Danlos’ Category
Posted on March 1, 2023
Living with Ehlers-Danlos Syndrome (EDS) as a high school student can be especially challenging. The normal struggle of balancing academics, extracurriculars, and social life, all while trying to figure out who you are as a person, is overwhelming for most teenagers and is made more complicated when having to manage a chronic illness. Many times, […]
Posted on February 26, 2023
I want to be okay. Some days I am. But some days, it feels like my words slosh about disjointed. My eyelids are heavy shades that won’t stay open. Pain suffuses every joint in my body, and the throbbing in my head makes it impossible to tolerate light or noise. Day-to-day is unpredictable, sometimes moment […]
Posted on February 23, 2023
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 […]
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 8, 2015
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 […]
Posted on July 31, 2015
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 […]
Posted on March 30, 2015
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 […]
Posted on March 20, 2015
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 […]