Why May is The Moment for “Complicated”

We didn’t plan it this way, but the release of our documentary film, Complicated, on Apple TV in May feels almost fated. Between Ehlers-Danlos Syndrome (EDS) Awareness Month and Mother’s Day, the timing reflects the very heart of this project that we started nine years ago. To see it come to fruition has been incredible, and I […]

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

Research Round-up, Edition Five: Pediatrics

Out of Spoons: A Spoonie-Centered Coloring Book from Author and Artist Jules Machias

The 35-page collection of hand-drawn illustrations isn’t just a fun distraction. It’s a deeply personal, empathetic offering from someone who gets it—someone who’s lived the pain, fatigue, brain fog, and isolation. Machias pairs each page with quotes that feel like inside jokes or quiet reassurances for the spoonie community. Whether it’s the chronic illness metaphors […]

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 […]

Neurodivergence and Hypermobility: The Autism-EDS Connection 

Chronic Pain Partners introduced the topic of neurodivergence and Hypermobility Spectrum Disorders (HSD) and Ehlers-Danlos Syndrome (EDS) in our first newsletter this year (January 2025), but autism has been shown to co-occur with EDS for many years, with an early published case dating back as far as 1993 and another in 2011. Neurodivergence comprises a […]

EDS Back to School Special – Prep for K-12, College & Accommodations