EDS West Connect

10/14/2026

🥡 One meal. Real progress.

This Thursday, October 15, your Panda Express order can support our work to help build the healthcare system people with Ehlers-Danlos syndromes (EDS) and hypermobility spectrum disorders (HSD) deserve.

From advancing research and improving pathways to diagnosis and care to expanding healthcare professional education, we're working towards a future where people with EDS and HSD can access more knowledgeable, coordinated, individualized care.

Order online or through the Panda Express app using code 9015928, and 28% of your order will support The Ehlers-Danlos Society's work.

💻 Online or app orders only
🍜 Participating Panda Express locations nationwide in the United States
🎟️ Fundraiser code: 9015928

Find out more and view the terms and conditions at https://www.community-fundraiser.com/virtual-fundraiser/events/promotions/0cab22b6-3ce8-6772-7676-7136f673c227/en/landing

10/09/2026

Somewhat vulnerable post ahead:
Tomorrow I go in for surgery 36.

As of November 2nd, it will have been a year since this particular stretch of my life began. In that time, I’ve been hospitalized 4 times, had 6 surgeries, survived sepsis, spent 108 days hospitalized at Saint John’s, followed by a medical flight to my New York neurosurgeon’s hospital for 50+ days. And, because apparently the universe wasn’t quite finished with me, I recently had COVID, too. Somewhere in between all of that, a beautiful life has still been happening, even when so much of it has happened inside hospital walls or in the aftermath of them.

But I’d be lying if I said this year hasn’t taken a toll. After 6 years without major medical issues requiring extended hospitalizations or multiple surgeries back to back, finding myself back in this cycle has been hard. Not just physically, but emotionally. I understand my medical conditions, know how to advocate, and can often explain exactly why I’m afraid. But sometimes the fear catches up with me anyway. Sometimes your body remembers things your brain is trying to move past. Sometimes the hardest part of going into a hospital is everything you carry with you through those doors. There is no easy fix for that. I wish there was.

Despite all that, I’m finally getting this dang shoulder fixed tomorrow. This surgery has been years in the making, and getting to this point has taken more than most people will ever see from the outside. It’s bittersweet because I know what the next 6 weeks will look like, and I know recovery isn’t a straight line. Especially as I get older. I don’t heal the way I did when I was 11 years old lol. But I also know why I need to do this. I need a break. I need to stop living through ER visits every 2–4 weeks. I need a break from the physical and mental exhaustion shown in this picture, the uncertainty of never knowing how I’ll be treated when I walk through those doors, and having so much of my life revolve around hospital rooms and constantly being forced to advocate for myself. I need to give myself time to heal emotionally, too. This has been one of the harder years of my life in that regard. I’ve spent so much time surviving, recovering, and preparing to do it all over again that I haven’t always had the room to process it. Lately, though, I’ve finally started to feel like I’m coming out of that place. I’m beginning to feel a little more like myself again.

I want to get back to the gym. I want to take trips without worrying about what might happen while I’m away from my own doctors. I want to make plans with my family and friends. I want to spend time with my daughter without feeling like I’m constantly borrowing energy from tomorrow to get through today. I want to just breathe.

6 weeks will feel long on the difficult, frustrating days. But 6 weeks is nothing compared to the years I hope to gain by finally taking care of this. So I’m trying my best to look beyond the surgery itself and toward what’s waiting on the other side of it. Tomorrow is surgery 36. I won’t pretend I’m not nervous, or that this last, very difficult year hasn’t contributed to that. But I’m walking into this one feeling ready, too.

Let’s do it.

— Kylee 💙

10/06/2026

Same pre-print but just a little more info!
Exciting times!

Dr. Bolognese has asked that we share the following.

https://www.preprints.org/manuscript/202608.0567/v1

This is a more detailed explanation-

Please share this amazing news!

Have you ever felt unseen or not believed by a physician?
Overwhelmed by the challenge of coordinating care among multiple specialists?

The Center for Neuro-EDS and Craniospinal Disorders is working to change this model of disconnected care.

Led by Dr. Paolo Bolognese, Dr. Allison R. Bloom, Dr. Illene S. Ruhoy, Dr. Randall A. Dass, Dr. Amanda Lerner, and Dr. Petra M. Klinge, a groundbreaking research paper, “Defining Neuro-EDS: A Neuro-Predominant Phenotype in hEDS/HSD and Related Heritable Connective Tissue Disorders,” is currently under peer review.

This paper is the culmination of discussions involving nearly three dozen international experts from multiple fields who care for and study complex Neuro-EDS patients.

By formally defining a Neuro-EDS endotype—a subcategory characterized by distinct biological and functional pathways—the goal is to advance several important objectives:

1. Unifying the language of the disorder
Creating a clear description and framework can improve communication among patients, physicians, and researchers.

2. Validating an endotype
Recognizing that conditions such as CCI, occult tethered cord, intracranial hypertension, spontaneous intracranial hypotension, cerebral and abdominal venous compressions, MCAD, dysautonomia, and related disorders can co-occur and contribute to multisystem symptoms may help researchers identify the underlying biological mechanisms and neuroinflammatory pathways connecting them.

3. Increasing recognition and access to care
Establishing a recognized disorder can eventually support the development of ICD-10 coding, potentially helping patients navigate insurance approvals while creating pathways for increased research funding.

4. Bringing current research and expertise to patients and physicians
Look forward to a YouTube channel featuring discussions with experts and patients, helping make emerging research more accessible to the broader community.

This is only the beginning.

Following peer review and publication of the paper, additional research will be needed to better understand the underlying biological mechanisms and, ultimately, develop improved diagnostic tools and treatments.

The Mount Sinai Health System is committed to developing a “medical home” model in which the burden of coordinating complex care can shift from the patient back to a team of knowledgeable experts.

For patients who have spent years searching for answers, being dismissed, or struggling to coordinate care across numerous specialties, this represents an important step toward recognition, understanding, and hope.

Please share this announcement widely.
Share it with patients who need hope.
Share it with physicians who want to learn.
Share it with researchers who can help advance the science.

Awareness creates opportunity. Research creates understanding. And understanding can lead to better care.

Read the paper and learn more about this important step forward:

For detailed research and more information, see neuro-eds.com

Discover expert care and support for individuals with Neuro-EDS at The Center for Neuro-EDS, where we prioritize your health and well-being.

10/04/2026

Four years ago, my two daughters and I set out to start a nonprofit to help others with Ehlers Danlos Syndrome. We made EDS West Connect a reality. ❤️

Here we are on the red carpet at the 2025 Slamdance premiere of COMPLICATED with one of our board members and our two service dogs! 🐾

One of those “I can’t believe we did it” moments. And we’re still just getting started. 🦓✨

09/16/2026

EDS West Connect stands with Ventura Orthopedics, the American Association of Hip and Knee Surgeons and the American Academy of Orthopaedic Surgeons in urging the Centers for Medicare & Medicaid Services to pause the proposed 2027 reductions in physician payment for total hip and knee replacement.

Medicare patients deserve timely access to experienced, high-quality surgical care!

For people living with Ehlers-Danlos syndrome, this concern is especially important. EDS patients already know what happens when specialized care becomes difficult to find: longer waits, fewer choices, extensive travel and months or years spent searching for someone who understands their condition.

Hip and knee replacement can also require additional expertise in EDS. Published research has found higher risks of implant instability, dislocation and revision among EDS patients undergoing joint replacement. Protecting access is not merely about preserving convenience. It is about ensuring that medically complex patients can reach surgeons with the experience and resources necessary to plan and manage their care safely.

We do not want Medicare patients to face fewer appointments, fewer participating surgeons or even greater distances/costs to obtain necessary care.

We are asking Congress to support payment that reflects the real work required to provide safe, high-quality hip and knee replacement care and to require that any future payment changes be based on current, procedure-specific evidence.

Your voice matters.

Please contact your United States representative now and ask them to sign Representative Greg Murphy’s letter urging CMS to maintain current hip and knee replacement payment levels while the evidence is properly reviewed.

The deadline is Monday, September 21:

https://www.votervoice.net/AAHKS/Campaigns/139787/Respond

Medicare patients deserve timely access to specialized care. EDS patients cannot afford to lose even more of it!!!

Read more here! https://www.aahks.org/advocacy/cms-payment-resource-center/

https://www.aaos.org/aaos-home/newsroom/press-releases/aaos-submits-comment-letter-to-cms-on-physician-fee-schedule/

A 2025 systematic review of 1,769 EDS patients found increased risks of revision, instability or dislocation and certain implant-related complications following hip or knee replacement. Read the PubMed study.⁠ https://pubmed.ncbi.nlm.nih.gov/39842525/

* A 2026 meta-analysis similarly found an almost threefold higher pooled risk of instability or dislocation among EDS patients undergoing joint replacement. Read the 2026 meta-analysis.⁠ https://link.springer.com/article/10.1007/s43465-026-01752-y

EDS patients already experience specialist scarcity, long waits and extensive travel. Any additional reduction in access to experienced surgeons could affect them disproportionately.

09/03/2026

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/