Parenting
Why Is It So Hard To Get A Genetics Appointment For My Child?
If you are a parent who is trying to get your child evaluated for Ehlers-Danlos Syndrome, you may have already discovered that it is often not a straightforward process. The Ehlers Danlos Society estimates it can take 10-12 years on average for a diagnosis. That can be a lifetime for a child. However, obtaining a […]
Much More Than That
One-liner: A family’s journey of finding their identity on the intersection of disability and queerness. Synopsis: Much More Than That is a 15-minute short film that delves into the lives of the Pollock family, who share deep connections that transcend their heritage. Jack and his mother Maria both live with Ehlers-Danlos syndrome, a rare and […]
Research Round-Up, Edition 2
→ BREAKING NEWS: Study finds biomarker that could lead to a blood test for hEDS & HSD ← Welcome back to the Research Round-Up, a summary of medical news you can use. We’ve got a lot of great research for you this month, so giddy up and git going! Yee-haw! If you have an article […]
EDS Back to School Special – Prep for K-12, College & Accommodations
If you are a student or a parent of a child who needs extra support for their illness and/or disability accommodations for school or to enter and succeed in grammar school up to college, this is for you and just in time with our list of helpful resources. For Students K-12 Read our resourceful guide […]
A Mother’s Day Shout Out from An EDS Mom and The Producer of Complicated
As a parent, it is hard to witness your child suffering with symptoms and physical pain. As mothers, we are often looked to, to make everything better, right? When my kids started having medical issues, I quickly learned that there was no parenting book to teach how to comfort and support your child when an […]
Filmmaker Suri Ellerton, Her EDS Journey & New Film Highlighting The Challenges Of Disabled Parents
Suri Ellerton is a filmmaker, has three children, and lives with Ehlers-Danlos Syndrome and various comorbid conditions. In this interview with Chronic Pain Partners’ Karina Sturm, Ellerton shares her EDS journey, what it means to be a disabled parent, and how her own experiences relate to her latest film project, “The Game.” Sturm: Hi, Suri! […]
Pey Carter and Daughter Abigail Speak About Their EDS Children’s Book
Pey Carter, a public speaker and author from Eau Claire, WI, and their daughter, Abigail Bailey, have a children’s book about Ehlers-Danlos Syndrome in the works: Bendy Bones and Stretchy Skin: An Ehlers-Danlos Story. In addition, Pey just finished a Kickstarter for an Ehlers-Danlos coloring book and is working on a memoir of their own. […]
Zebra Mamas: Parenting a Child With EDS
The Ehlers-Danlos Syndromes (EDS) are a collection of heritable connective tissue disorders* that affect many organ systems and often come with several other conditions. It’s a genetic condition, which means many families manage the lives of several zebras simultaneously. Living with complex conditions such as EDS as an adult is challenging at the best of […]
