EDS West Connect

03/22/2026

SALT LAKE CITY, UT (Good Things Utah) – The award winning film ‘POTS: An Invisible Illness’ brings awareness to the condition especially in children. Dr Craig Coleby and film dire…

03/22/2026

This is a BIG one for the EDS community who suffer from CCI 🚨

A new paper just dropped on craniocervical instability (CCI) in Ehlers-Danlos and connective tissue disorders… and the names on it matter.

Jeffrey Wood. John Biggins. Paolo Bolognese.

If you know, you know.

But what really stood out in this paper is something many patients have never even heard of:

👉 ICT (Intraoperative Craniocervical Traction)

This isn’t just about looking at static scans anymore.

This is about dynamic, real-time testing to answer a critical question:

What happens when the craniocervical junction is actually supported?

In this study, patients underwent controlled traction—gradually applied—while doctors monitored:
• symptoms
• neurological response
• and changes in measurements

And here’s the key:

👉 Some patients who didn’t clearly meet criteria on imaging showed significant improvement during ICT
👉 That response helped identify who might truly benefit from surgical stabilization

Let that sink in.

For years, patients have been told:
“You look fine.”
“Your scans are normal.”
“There’s nothing we can do.”

But this kind of work is showing that:
static imaging does not tell the whole story

We have lived this.

Kylie has undergone ICT.

And when you see it, when you understand what’s actually being evaluated, it changes everything.

This isn’t theoretical.
This is real-time, mechanical, neurological response.

This is the bridge between:
• symptoms
• imaging
• and surgical decision-making

This paper represents something bigger:

👉 Movement toward structured protocols
👉 Movement toward objective evaluation
👉 Movement away from dismissal

And for families walking this path…

That matters more than words can explain.

This is how change happens.
Not overnight—but paper by paper, patient by patient, truth by truth.

We’ve been told “nothing is wrong.” This is part of the science proving otherwise.

https://pmc.ncbi.nlm.nih.gov/articles/PMC12979416/

02/26/2026

The Norris lab has partnered with MUSC to change medical school education! We recognize that prioritizing EDS education in medical schools and other healthcare institutions is a foundational step toward better recognition, diagnosis, and management of EDS. By working to bring up-to-date understandin...

02/18/2026

02/18/2026

Join The Ehlers-Danlos Society for the Female Health Summit, a virtual event happening on March 7, 2026. Tailored for individuals with Ehlers-Danlos syndromes (EDS) and hypermobility spectrum disorders (HSD), as well as the healthcare providers and caregivers who support their care, this summit brin...

01/10/2026

Today we learned that Allison White, a member of the Craniocervical Instability community, has lost her life.

We were informed in the group, and like so many times before, the news landed heavily. Another life. Another family. Another reminder of how serious and devastating these conditions can be.

In response, we created the image you see here. This is something we can use, if we choose, as a profile picture or in our stories whenever someone with Ehlers-Danlos Syndrome passes away… for awareness, remembrance, and truth. And to gently acknowledge a reality our community knows well, that Ehlers-Danlos Syndrome and its complications can be life-limiting, and that these losses happen far more often than many people realize.

When you see this image, it means another EDS zebra warrior has gained their wings.

Tonight, we hold space for Allison, for those who loved her, and for every family walking this road of grief far too often. May she rest peacefully, free from pain. 🤍🕯️🦓

01/04/2026

BIG NEWS!!! 🎉📰🚨
Yesterday was a major day in medicine and science for the recognition autonomic dysfunction for patients with hEDS. So what does this mean?

🔜 Better and Faster Diagnostics for Autonomic Dysfunction
✔️ Less Medical Gaslighting
☑️ Validation for Patients
❗️ Clearer Medical Framework
❕ Improved Access to Care and Accommodation
‼️ Momentum for Research and Treatment

See the article here: https://www.sciencedirect.com/science/article/pii/S2667036425000354?ref=pdf_download&fr=RR-9&rr=9b880f5fdbc7b0df

12/21/2025

12/17/2025

✨ Honoring Leadership Through Service ✨

We are incredibly proud to share and celebrate that in October EDS West Connect nominated Bishop Lamont Hayes, and today we had the honor of witnessing that nomination come full circle with his recognition by the City of Oxnard Community Relations Commission as a Community Volunteer Award recipient.

Bishop Lamont’s leadership through the Ventura County Resource Center and New Progressive Christian Baptist Church has left a meaningful imprint across Oxnard. He doesn’t wait for the call… he initiates it. He brings people together, opens doors, lifts others up, and creates space where community truly happens.

From hosting the Complicated documentary screening and welcoming individuals with invisible disabilities, to organizing inclusive, community-wide events like the Rock the Block Resource Fair, Bishop Lamont leads with compassion, unity, and service in action.

We are deeply grateful to work alongside a true community builder whose heart is centered on the wellbeing and success of the entire Oxnard community. Congratulations, Bishop Lamont! This recognition is so well deserved. 💙

12/09/2025

Sixteen years ago, we began doing this work one family at a time.
Almost three years ago, when we officially launched EDS West Connect as a 501(c)(3), we wanted to make sure our mission reflected exactly what our community needed most.

So we asked.
You answered.
And this is what we heard loud and clear.

Here are the top needs identified by the EDS community we serve: from knowledgeable doctors, to access to specialists, to funding for care, local support, disability resources, respect, and more. Every slice of this chart represents a lived experience, a gap in the system, and a place where advocacy matters.

These responses shaped our programs, our partnerships, our education efforts, and the heart of our mission.

We exist to represent your wants and your needs.
And we are just getting started.

1 in 100. Hiding in Plain View.
Can you spot our stripes?

12/06/2025

Finally the moment you have all been waiting for. The full Documentary of Maartje van Den Kerkhof and her fight for a new life. • An MF Films Production ~ in...