Scoliosis & Ehlers-Danlos Syndrome Awareness

“A human signature at the end of an automated process is not the same thing as meaningful human oversight….

…We see people scared to ask for a review, because they don’t want to rock the boat and end up with no support at all.

We see participants struggling to understand decisions that profoundly affect their daily lives – some who have gone from 24 hour, one-on-one care to four-six hours of “drop-in support”, forcing them to ration toilet access and basic care.”

Well said, and great article Zoe. 🩵🙏🏼

We've seen this before: Robodebt, NDIS and danger of forgetting One of the most troubling aspects of Robodebt was that so many warning signs existed. We can't afford to ignore NDIS reform warning signs.

Living with a rare type of EDS isn’t something I’d ever choose. 🦓

The pain, surgeries, fatigue, injuries, instability and unpredictability far outweigh any “perks.”

But if there’s one thing I’ve become good at, it’s finding humour in the absurd.

Some of these unexpected “skills” definitely come in handy. Others… I’d happily trade for connective tissue that actually holds. 😅

Finding humour in the weirdness doesn’t minimise the reality of living with a complex condition—it just reminds me that even in the hardest moments, there’s still room to laugh.

What’s your unexpected superpower? 😂👇🏼


[ID: Teal graphic listing humorous “EDS superpowers,” including picking things up with toes, pretzel sitting, looking younger, and defying the odds, highlighting the lighter side of living with Ehlers-Danlos syndrome.]

Most people think motion sickness is just feeling a little queasy. 🤢

For me, it’s another reminder that my autonomic nervous system struggles to regulate the world around it.

Living with POTS and autonomic dysfunction means my body is constantly trying to respond to changes most people never have to think about. 🌀

Standing up.
Heat.
Pain.
Fatigue.
Stress.

And then there’s movement.

Car rides.
Boats.
Planes.
Winding roads.
Even walking.

POTS affects the automatic functions that keep us alive, including regulating heart rate, blood pressure and temperature. 🥵🥶

Many people with POTS also have reduced blood volume, making it harder to get enough blood back to your heart and up to your brain—especially when gravity, movement or prolonged standing are involved.

Every bump, corner, acceleration and change in direction gives my brain and inner ear more information to process. At the same time, my body is already working harder to fight gravity and maintain blood flow to my brain. 🧠

Eventually, the extra demand overloads my autonomic nervous system, and it crashes like a computer glitch.

I end up nauseated, dizzy, clammy, exhausted, trembling, with my heart racing and that overwhelming feeling that I could black out at any moment. I feel disconnected from myself, like my brain and body are no longer communicating. 😵‍💫

It’s not anxiety.
It’s my system misfiring.

I try to push through. I try to mind over matter. But there comes a point where willpower can’t override physiology.

Sitting or lying down, along with oxygen, fresh air, cold packs, hydration, electrolytes and salt, helps stabilise everything. But “just drink more water” is where managing POTS starts, not ends.🧂

POTS isn’t just “getting dizzy” or “heart palpitations”.

It’s a full-body storm of symptoms that can hit hard without much warning or control.

It’s not dramatic.
It’s Dysautonomia.

It’s about a nervous system that’s constantly trying to keep up with a world that never stops moving. 🫀😵‍💫 🏩🦓😶‍🌫️


[ID: Jayde wearing a beanie, sunglasses and a nasal oxygen cannula while waiting for the ferry to leave from Rottnest Island. The image accompanies a post about POTS, dysautonomia and motion sickness.]

Over the weekend, I took my wheels to Rottnest for the first time. ♿️

We were there to celebrate my Nan’s incredible 92 years of visiting the island and honour her memory. ✨

Not everyone who uses a wheelchair is unable to walk.

Many disabilities are dynamic, meaning a person’s mobility can change depending on pain, fatigue, symptoms, and the demands of the day.

I can walk.

But I can’t always walk far, safely, or without paying for it afterwards.

I was really impressed by how accessible Rottnest is. The ferry crew were fantastic, getting around the island was far easier than I’d expected, and having my wheelchair meant I could do so much more than I could have on foot.

Less pain.
More capacity.
More moments that mattered.

Instead of spending the weekend calculating every step and trying to conserve my energy, I was able to be present and simply enjoy the time away. 🌊

Rolling up in front of the bungalow that has brought together four generations of my family was one of those moments I’ll never forget.

Accessibility doesn’t just make places easier to visit—it makes moments like this possible. 🤍

“Scoliosis is not always the diagnosis. Sometimes it’s the clue.”

Thank you to The Ehlers-Danlos Society for sharing my story and helping raise awareness of the important connection between scoliosis and connective tissue disorders. 💙

It took more than 30 years for my scoliosis to be recognised as one of the earliest signs of Kyphoscoliotic Ehlers-Danlos Syndrome (kEDS). My hope is that sharing my story encourages more people to ask “why?” and helps future generations spend less time searching for answers than I did. 🦓

You can read the full interview below.👇🏼

Yesterday was 2 years since my right hip arthroscopy.

The surgery removed a shredded labrum that had reached the point where my tissue was hanging on by a thread.

The pain was relentless. 💔

The catching sensation felt like somebody was trying to rip my leg apart from the inside.

The surgery helped with some of the pain.
But recovery in a body with Kyphoscoliotic Ehlers-Danlos Syndrome was never going to be easy. 🦓

What I wasn’t prepared for was how much instability would become the bigger challenge.

Pain is familiar territory for me.
Instability is different.

My pain is predictable.
Instability means feeling stable one moment, only for your hip to suddenly give way without warning the next.

One wrong movement can stop me in my tracks.

Two years later, I’m still working on strength and stability every week through physio and hydrotherapy.

We’re still building.
Still retraining.
Still teaching my body how to support joints that connective tissue was never designed to stabilise properly.

The progress is real, but it’s slow.

Not because the surgery failed.
Because my body is managing far more than a shredded labrum.

Hip dysplasia.
Coxa valga.
Cam morphology.
FAI
Osteoporosis.
A lifetime of compensation patterns.

Every gain takes repetition.
Every gain takes time.

The left hip will need surgery one day too.
But now, I think about that decision very differently.

I’m waiting and trying to buy myself as much time as possible.

Having the surgery was the right decision.
But I understand now that “successful surgery” and “finished recovery” aren’t the same thing.

I’m still learning that healing isn’t always measured in months. Sometimes it’s measured in years. 🩵

The NDIS isn’t just about making life easier.
For many people, it’s what makes life possible.

It’s about being able to get out of bed.
Attend medical appointments.
Prepare meals.
Access therapy.
Participate in the community.
Spend time with friends and family.
And live with dignity.

As someone living with a rare degenerative connective tissue disorder, I know firsthand that support isn’t a luxury.

It’s the difference between coping and crisis.

The recent NDIS changes have left many participants and families worried about what the future will look like if essential supports are reduced or removed.

Disability doesn’t disappear because funding does…

People with disabilities deserve access to the supports they need to live meaningful lives!

Please consider signing and sharing this petition if you agree. Every voice matters. ❤️

https://www.change.org/p/protect-the-ndis-don-t-cut-the-supports-people-need-to-live-ordinary-lives

Jayde Walker Rob Walker

Sign the Petition Protect the NDIS: Don’t cut the supports people need to live ordinary lives

When I was diagnosed with severe scoliosis at five years old, my condition was classified as idiopathic, meaning no known cause.

For decades, that was the answer. One that never quite fit.

Then, at 36, I was diagnosed with Kyphoscoliotic Ehlers-Danlos Syndrome (kEDS), a rare connective tissue disorder. 🧬

Once kEDS was identified, the explanation changed.

My scoliosis was no longer considered idiopathic.

It’s syndromic.

Syndromic scoliosis occurs when scoliosis develops as part of an underlying condition or genetic syndrome. In kEDS, severe early-onset scoliosis is a recognised characteristic, with fragile connective tissues affecting the structures that support and stabilise the spine, as well as the rest of the body.

The diagnosis didn’t change my twisted spine. But it has changed how I understand it. 🦓

For the first time, my scoliosis wasn't being viewed as an isolated problem. It’s part of a much larger pattern that connects a lifetime of seemingly unrelated diagnoses, complications, and symptoms.

A reminder that sometimes the most important question isn’t just “What is the diagnosis?”

It’s “Why?”


[Infographic explaining the different types of scoliosis, including idiopathic and syndromic. Shared during Scoliosis Awareness Month alongside a reflection on severe childhood scoliosis later linked to Kyphoscoliotic Ehlers-Danlos Syndrome (kEDS). 💚🦓