Scoliosis & Ehlers-Danlos Syndrome Awareness

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). 💚🦓

When most people look at my spine, they see the curves.

The scars.
The metalwork.
The X-rays.

What they don't see are the years spent in a brace, the rehabilitation, the appointments, the surgeries, the pain, the adaptations, and all the ways scoliosis shaped my life long before I understood why.

For decades, my severe scoliosis was considered idiopathic.

No known cause.

Then, at 36, I learnt it was connected to a rare genetic connective tissue disorder that had been affecting my body since birth.

Sometimes I wonder how different things might have been if we'd known sooner.

But mostly, I'm grateful that today's children have more awareness, more research, and more access to earlier diagnosis and support than ever before.

June is Scoliosis Awareness Month 💚

It's for every person navigating scoliosis — whether your curve is visible, invisible, mild, severe, newly diagnosed, or something you've been carrying for years.

Because scoliosis may shape your story.

But it is never the whole story.


[ID: A collage showing a childhood photo of a smiling girl holding her cat beside a current photo of a woman sitting on coastal rocks watching the sunset. The image represents a lifelong journey with severe scoliosis and the path to understanding a rare underlying diagnosis.]




Jayde Walker

Why Research Matters: ♥️
One of the hardest parts about living with Ehlers-Danlos Syndrome Type 6 is knowing that medicine and science are still learning about it.

I’m now over two years into my diagnosis —
and my body still surprises me and my healthcare team.

Not because we aren’t trying.
But because rare connective tissue disorders like kEDS are so poorly understood.

Symptoms overlap.
Systems compensate.
And the body adapts in ways medicine is still trying to understand.

There isn’t a clear roadmap for bodies like mine.

A lot of treatment becomes careful trial and error.

Introducing something slowly.
Watching how my body reacts.
Adjusting.
Backing off.
Trying again differently.

Because what helps one symptom can flare another.
And what works for one person with EDS may completely unravel someone else.

That uncertainty is exhausting. 😩

Not just physically —
but emotionally too.

Living with a rare condition means existing in the space between what’s medically recognised and what’s still being discovered.

It means becoming part patient,
part researcher,
part detective. 🕵️‍♀️

Learning patterns most people never have to think about.
Trying to explain symptoms that don’t fit neatly into textbooks.
Navigating complications there isn’t enough research on yet.

That’s why awareness matters. 🦓

Because research changes outcomes.
And lived experience helps people understand the reality behind the diagnosis.

It improves diagnosis.
Improves treatment.
Improves quality of life.

It helps specialists recognise patterns sooner instead of dismissing patients for years.

Most importantly —
it reminds people with these conditions that they are not invisible.

I’m incredibly grateful for the healthcare professionals willing to learn alongside me.
The ones who stay curious.
Who listen.
Who treat me like a person, not a problem to solve.

Because when it comes to rare disorders, collaboration matters more than ego ever will.

Curiosity has changed my care more than certainty ever has.

That’s why research matters. 🩵


[ID: Jayde sits on a boat reading a book while surrounded by calm water and natural scenery. The image has a quiet, reflective mood and conveys curiosity and learning]




The Ehlers-Danlos Society Jayde Walker

Day 24 of EDS Awareness Month 🦓

One of the hardest things I’ve had to unlearn is the idea that pushing through pain is strength.

For a long time, I thought ignoring my body made me resilient.

Keep going.
Push harder.
Work through it.
Don’t stop.

So I did.

I pushed through unimaginable pain.
Through exhaustion.
Through instability.
Through symptoms my body was screaming at me not to ignore.

Because that’s what so many of us are taught, isn’t it?

That rest is weakness.
Slowing down means failing.
Productivity matters more than sustainability.

But bodies like mine don’t tolerate that mindset for long.

Eventually, forcing my way through stopped looking like strength —
and started looking like prolonged recovery, flares, injuries, and burnout.

I’ve also had to unlearn the idea that support should only be used once I’ve reached breaking point.

I treated rest, pacing, and mobility aids like something I had to “earn.”

Like I needed to completely collapse first.
Like using support earlier somehow meant I wasn’t trying hard enough.

But I’m learning that bodies like mine function better with preventative support — not just crisis management.

Using my wheelchair strategically means I can do more.
Recover better.
Prevent bigger flare-ups.
Expand my capacity instead of constantly pushing beyond it. ♿️

I’ve had to learn that pacing is not laziness.
Rest is not giving up.
And slowing down before my body crashes is not weakness.

Sometimes the strongest thing I can do is stop early.
Modify the plan.
Cancel something.
Recover before things get worse.

That’s not failure.
That’s survival.

Living with a rare type of Ehlers-Danlos Syndrome has forced me to redefine what resilience means.

These days, strength looks less like endurance at all costs —
and more like knowing when my body needs support. 🩵


[ID: Silhouette of Jayde sitting by the ocean at sunset with a mobility aid. Overlaid text reads: “Strength looks less like endurance at all costs — and more like knowing when my body needs support.”]



Jayde Walker The Ehlers-Danlos Society