Parenting
Episode 2: Medically Complex Children
Listen to the full episode here: Cassandra You’re listening to the EDS Unplugged podcast brought to you by Chronic Pain Partners, a non-profit supporting the Ehlers-Danlos Syndrome community. Marcia Welcome back to EDS Unplugged. I’m Marcia Brock. Cassandra And I’m Cassandra A Campbell. Marcia Today we are excited to be joined by […]
“Watch Out For Mum” – Wrongful Child Abuse Allegations Harms Whole Family
Parenting children with Ehlers-Danlos syndromes — or EDS — is a sport on its own. From the moment my children were born, I knew something wasn’t right. They were symptomatic from birth, but for years, doctors couldn’t figure out what was going on. And even when we finally found answers, the hardest battles weren’t against […]
Research Round-up, Edition Five: Pediatrics
Welcome back to Research Round-Up. This time, we’re looking at research that focuses on Ehlers-Danlos Syndrome (EDS) and Hypermobility Spectrum Disorder (HSD) in the young ‘uns, from birth to age 18. While some of the effects of EDS can be the same on adults as on the little ones, sometimes, the kiddos have more to […]
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 […]
