Scoliosis & Ehlers-Danlos Syndrome Awareness

Scoliosis & Ehlers-Danlos Syndrome Awareness Navigating life with Scoliosis & EDS Type 6 🦓
Chiari & Epilepsy 🧠
Genetically Gumby 🎗️
Awareness and support for invisible and rare disabilities 🦄

Hi 👋 I’m Jayde. I may look ‘normal’, but I have multiple severe and rare disabilities that impact me daily. I first felt intense pain at 3 years old. What started as pediatric migraines turned into a diagnosis of severe Idiopathic Scoliosis and Kyphoscoliosis, my twisted spine with three sharp curves. ⚕️

Scoliosis is much more than a curvature of the spine - it impacts your entire body and centra

l nervous system. Misfiring messages from your brain to the rest of your body. Surgeons and specialists poked and prodded me for years. When the severity of my curves progressed far too quickly for usual idiopathic cases, it forced my orthopaedic doctor to dig deeper. But when no neurological or cardio cause was found, the idiopathic label stuck and the reason for my rapidly twisting spine remained unknown. 💔

It was managed by many major surgeries and a horribly hard slab of plastic I wore 22 hours a day 7 days a week for a decade; the Wilmington brace I coined my ‘plastic prison’. When I was 9, my symptoms intensified. I was diagnosed with a neurological disorder (Chiari Malformation) where part of the brain tissue falls into the spinal cord. This caused syringomyelia in my cervical spine, a syrinx that manifested into painfully wild migraines and loss of feeling in my arms and legs. It was considered a comorbid condition of my scoliosis. The outcome was brain surgery to remove my C1 vertebrae, allowing my spinal fluid to flow more freely. At 15 years old, I swapped my plastic prison for titanium rods. It took two separate major surgeries to straighten the 95 and 65-degree curves. First, a thoracoplasty from the right side of my body and second, a fusion and bone graft from the back which fused my spine from T3-L4. 🏥

While the surgeries were successful (albeit with complications), my curves are still severe - 60, 55 and 45 degrees. More than 30 years later, the missing piece of the puzzle was revealed. The one in a million to my story. 📚

It took three specialists: a physiotherapist, a rheumatologist and a geneticist to piece together everything. Combined with my progressing symptoms, a backlog of medical history that speaks volumes and a diagnosis of a connective issue disorder in my family, we finally found the ‘why’ behind everything. There is no cure for Scoliosis or Ehlers-Danlos Syndrome, but I believe that with support, research, and awareness, we can raise awareness of the conditions and how they can interconnect and manage the symptoms as best as possible.

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***About Scoliosis***

Scoliosis is a condition that affects 2-3% of the population, an abnormal curvature of the spine (normally in an S or C shape). If left untreated, severe scoliosis can lead to serious spine, chest, pelvis, and heart and lung damage. Severe scoliosis affects:

- Lung & heart function
- Bone development
- Chronic pain
- The body’s nutritional resources
- Neurological symptoms - muscle weakness & nerve pain etc
- Hormones
- Digestive & metabolism system
- Posture, balance & body alignment

Scoliosis is a multifactorial disorder that requires holistic, specific treatment and research. With idiopathic scoliosis, it's unknown who will get it, why they will get it or if it will progress and how far. There is no cure.
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***Scoliosis Awareness – Early Detection, Early Correction***

In the last 15 years, I have been fairly closed off about my condition and the past battles I have faced with it. Not because I was embarrassed or upset about it, but simply because it was the easiest thing to do and for me, the 'best' way to deal with it all. When I had my last major surgery at the age of 15 and after a very long recovery, I became a new person and was more than happy to push aside who I once was to finally have my shot at living a somewhat normal life. In 2014, I started to witness first hand how my story could impact other people’s lives—those in the lead-up to their surgery, those fighting the same battle, and their families. Scoliosis affects everyone in different ways, and for the first time in my life, I found how my situation could influence these stories positively and how I could share an understanding with people in the same boat as me or similar. Scoliosis can also be a comorbidity of Ehlers-Danlos Syndrome - a group of 13 heritable connective tissue disorders that manifest into a wide range of symptoms affecting your body from head to toe. We didn't know the link between Scoliosis and EDS until more than 30 years after my initial diagnosis. Ehlers-Danlos is one of the most misunderstood and under diagnosed conditions in the history of modern medicine. On average, it takes 14 years to be diagnosed.
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I will be completing a swim (50 laps) on the weekend of September 27th 2014 to raise funds (this date represents my operation anniversary). All funds raised will be donated to The Scoliosis Kids of Australia for awareness of the condition, early detection and research for a cure and medical treatment through Edith Cowan University. ALL FUNDS RAISED GO TO SCOLIOSIS KIDS AUSTRALIA FOR EARLY DETECTION, RESEARCH AND AWARENESS OF SCOLIOSIS.

**Note: Swim has been completed and the fundraiser finished as of 6/10/14. We raised over $2k and completed the swim in under 40 minutes. Funds raised were given directly to the nominated organisation, Scoliosis Kids Australia. I will be keeping this page open to continue to raise awareness of scoliosis and provide support for those going through their own scoliosis or invisible and rare disability battles. Please feel free to contact me directly or share the page.**

Day 24 of EDS Awareness Month 🦓One of the hardest things I’ve had to unlearn is the idea that pushing through pain is st...
24/05/2026

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

Day 16 of EDS Awareness Month: My Type, My Experience. 🦓I have Kyphoscoliotic EDS (kEDS) or EDS Type 6 —one of the rarer...
16/05/2026

Day 16 of EDS Awareness Month:
My Type, My Experience. 🦓

I have Kyphoscoliotic EDS (kEDS) or EDS Type 6 —
one of the rarer subtypes of Ehlers-Danlos Syndrome.

And while people often hear “EDS” and think flexibility or hypermobile joints…

my experience is much more structural than that.

My spine twists in 3 ways.
My ribcage rotates and compresses organs.
My joints move beyond where they’re meant to.
Nothing in my body holds itself effortlessly — everything compensates for something else.

Even simple things become physically demanding.

Standing “straight.”
Breathing deeply.
Holding posture.
Walking too long.
Recovering from small amounts of exertion.

Things most people never have to think about become constant calculations in my body.

kEDS affects far more than joints and connective tissue.

For me, it overlaps with neurological symptoms, autonomic dysfunction, fatigue, pain, instability, and structural complications that very rarely occur together in the way they do with my body.

Some doctors have referred to me as a “medical unicorn” —
not because any of this feels magical,
but because the combination of complications they’re seeing together is so unusually rare. 🦄

Everything is connected. 🧩

One flare triggers another.
One unstable area forces compensation somewhere else.

And because rare EDS subtypes vary so much from person to person, no two experiences look exactly alike.

There is no universal presentation.
No one-size-fits-all experience or solution.

Some of us use mobility aids.
Some live in braces.
Some are functional.
Some are bed-bound.
Some look outwardly “fine” while fighting enormous physical instability.

Many of us become experts in adapting quietly.

Learning how to move through a world not built for bodies like ours.

This is my type.
My version of kEDS.

Rare doesn’t mean any less real. 🦓
[ID: Side-profile of Jayde’s spinal X-ray showing severe scoliosis, spinal fusion rods, and structural changes related to Kyphoscoliotic Ehlers-Danlos Syndrome.]

The Ehlers-Danlos Society Jayde Walker

Day 10 of EDS Awareness Month: “How do you keep it together?” 🧩I get asked this a lot.And the truth is —it’s not effortl...
10/05/2026

Day 10 of EDS Awareness Month:
“How do you keep it together?” 🧩

I get asked this a lot.

And the truth is —
it’s not effortless.
And it’s not constant either.

There are many days where my body feels like it’s unravelling in real time.

Pain that shifts without warning.
Energy that disappears mid-thought.
A body that doesn’t stay steady long enough to trust.

Holding it together doesn’t come from ignoring any of that.

It comes from seeing the hard parts clearly —
and choosing to look beyond them anyway.

Not because it’s easy.
But because the alternative is letting this take more than it already has.

Living with Kyphoscoliotic EDS already steals enough.

It takes energy.
It takes consistency.
It takes parts of your independence,
your plans,
your sense of certainty.

I refuse to hand it the rest of me. 🦓

So I look for what’s still here.
I search for the silver linings. ✨

The small moments.
The wins.
The steadiness between flare-ups.
The things my body can still do — even if they look different now.

And choosing to meet that —
instead of only meeting the loss —
is how I keep it together.

Not perfectly.
And definitely not all the time.

But intentionally.

It’s not about pretending I’m okay.
It’s about refusing to let this take everything.
[ID: Jayde and her husband sitting together at Plant Bistro, Bali, smiling at the camera while sharing drinks at a marble table. Warm lighting and tropical surroundings contrast with the caption’s reflection on living with Kyphoscoliotic Ehlers-Danlos Syndrome.]
The Ehlers-Danlos Society

May is EDS Awareness Month ♥️ 🦓 What good care looks like with Ehlers-Danlos Syndrome isn’t complicated.But it is rare. ...
08/05/2026

May is EDS Awareness Month ♥️ 🦓
What good care looks like with Ehlers-Danlos Syndrome isn’t complicated.

But it is rare. 💎

It’s being listened to —
without having to prove your pain first.

It’s being taken seriously,
instead of being dismissed because you can smile through an appointment.

Because you look “too fine” to be struggling.

It’s doctors and health professionals who understand that people with EDS often live with pain so constant and abnormal,
we stop reacting to it the way others expect us to.

So they ask questions.
They dig deeper.
They look past the facade.

Good care is not being rushed through appointments where only one symptom is considered —
as though each issue exists separately from the rest.

Because EDS is rarely just one problem.
It’s a full-body puzzle where everything affects everything else. 🧩

Good care looks like people willing to think outside the box.
People who understand that what works for one may not work for another —
and are willing to bend the usual approach to fit the person, not just the condition.

It’s practitioners who consider the entire picture —
not just what they see in 15 minutes,
but the reality of how that body functions every day.

Good care is being believed when something feels wrong.
Not ignored.
Not insulted.
Not told you’re “fine” when you’re clearly not.

It’s healthcare that treats us like human beings —
not inconveniences.
Not exaggerations.
Not impossible cases.

Because sometimes the most powerful part of care
is simply being seen properly in the first place. 🩵
[ID: Jayde standing on black volcanic sand at the edge of the ocean, smiling softly while using a walking stick for support. Sunlight reflects across the water and shoreline, contrasting the calm, relaxed moment with the the reality of living with chronic pain and disability.]

The Ehlers-Danlos Society Jayde Walker

16/04/2026

A sweet little video my husband made of our latest adventure — showing just how much more I can do now. 🩵

My EasyWheel attachment has opened up ground that once wasn’t possible. Off-road trails, sandy and uneven paths — the kind of places that aren’t always easy to navigate in a wheelchair… now within reach. 🤘🏼

More places to go.
More ways for us to get there — together. ♿
[ID: Video of a woman using a wheelchair with an EasyWheel attachment moving over sandy and uneven outdoor terrain, showing improved mobility off-road]
Wild West Wheelchairs

15/04/2026

This is the next step. 😎
A new movement — and my first time attempting it.

We’ve started light, not because it’s easy, but to see how my body handles it —
not just in the moment, but in the hours and days after.

That’s where the real test is…💔

It’s not just about what I can do today.
It’s about what it costs tomorrow, and how long it takes my bendy body to recover.

For me, even the right movement can still unravel things.
That’s why we go slow.
[ID: A woman with a rare form of Ehlers-Danlos Syndrome attempts a new move in physio, lifting both arms with light weights to test range, control, and how her body responds over time.]

Iluka Physio Jayde Walker

14/04/2026

What I’m doing in this video might look subtle.
But the difference I feel is everything. 🔥

My body is built on connective tissue that doesn’t work properly.
My spine is twisted,
with more than half of it fused,
and my muscles work overtime to stabilise me — but with low muscle tone from my condition, and a body that doesn’t structurally hold, nothing fires the way it should.

So everything takes more effort.
More intention.
More energy.

We 𝘢𝘳𝘦 strengthening —
just at a slower, consistent pace my body can actually sustain.
Building control through repetition,
teaching muscles (especially through my right upper side) how to work in positions they’ve never known. 💪🏼😎

For most of my life, my right shoulder has been pulled forward by my curves.
Blocked by my rib hump.
Limited in reach.
Painful — excruciating when pushed.

Before working on this with my physio, I could barely lift my right arm halfway.

Now — with the right support, traction, and hands-on guidance —
I’m finding space and movement where there wasn’t any.

More reach.
Less nerve pain through my right shoulder.

They’re small shifts.
But in a body like mine?
They’re huge. 💥🤘🏼🦓

⸻⸻

Months of work in this one movement.

13.5kg might not look like much — but in a kEDS body like mine, it reflects hard-earned progress.
[ID: A woman with a rare form of Ehlers-Danlos Syndrome performs a physiotherapy movement, lifting both arms with control to improve range and stability, showing progress built over time.]

Iluka Physio Jayde Walker

I still paint most weeks — even though my body doesn’t make it easy anymore. 🎨Painting used to be somewhere I could disa...
09/04/2026

I still paint most weeks — even though my body doesn’t make it easy anymore. 🎨

Painting used to be somewhere I could disappear into.

As a kid, it was one of the few things that slowed everything down.
Thoughts settled. The noise softened.
The world narrowed to colour and movement across the canvas.

It was a hobby I loved — a creative outlet that, unlike writing, was never meant to become work. ✨

With Ehlers-Danlos Syndrome, my hands don’t always cooperate the way they used to.

Hypermobile joints slip where they shouldn’t.
Fingers collapse under the pressure of holding a brush.
Sometimes they tremble.
Or simply stop listening.

Pins and needles creeping down my arms.
A constant electrical buzz under the skin.

The kind of thing that turns a steady line
into something shaky and unpredictable.

Fatigue plays its part too.
What once felt restorative now costs energy I don’t always have.

And perfectionism doesn’t help…😆

My brain still remembers when my hands were easier to rely on.

So painting looks a little different now.
But it still helps.

Some weeks the brush behaves.
Some weeks my nerves and joints win.

Still, I show up to the canvas. 👩🏻‍🎨

Not because it’s easy.
Not because it turns out the way I imagined.

But because for a little while, the symptoms, the appointments, the medical vocabulary — all of it fades into the background. 🩵

And for a while,
my body stops being the loudest thing.

Some days
that’s enough.

“Art enables us to find ourselves and lose ourselves at the same time” 🫟
— Thomas Merton.
[ID: A woman (me) holding a painting of a whale tail rising from the ocean under a full moon, pictured at an easel in a leafy outdoor space.]

Happy anniversary to my husband — my best friend, my carer, and the one who holds steady through every version of me. 💋Y...
06/04/2026

Happy anniversary to my husband — my best friend, my carer, and the one who holds steady through every version of me. 💋

You’ve been my constant in a body and life that don’t always play by the rules.
Steady where I unravel.
Grounded where I storm.

Thank you for your fierce loyalty.
For believing in me when things feel uncertain.
For showing up — again and again — through the calm, the chaos, and everything in between.

♥️🤘🏼🥂

Jayde Walker Rob Walker

This week has been big in the most exhausting of ways.But yesterday, I had a win worth sharing. ✨🥂My spine has three cur...
20/03/2026

This week has been big in the most exhausting of ways.
But yesterday, I had a win worth sharing. ✨🥂

My spine has three curves and is fused from T3 to L4 due to Kyphoscoliotic EDS.
It will always be structurally twisted.

Over the past five months, I’ve been working with the Schroth method — alongside my regular physio and hydrotherapy —
the curve itself hasn’t changed.
And it’s not expected to.

But something else has. 😬

My body is learning a new way to support itself around my spine.

Yesterday, my scoliosis physiotherapist compared the results — and I wasn’t expecting to see this… ❤️

Less collapse into the concave side.
Better balance through my shoulders and pelvis.
Less twist in my torso.
A subtle softening in how dominant my rib hump appears.

It’s really strange to see my back look “straighter” when I know structurally, it isn’t.

It shows how much things can shift when I start using muscles my body has never known how to use.

When I relax, I fall right back into old patterns.
But with consistency and repetition — correction, traction, and time — those patterns begin to vary as muscle memory builds.

There’s no cure, only ongoing ways to work with the body I have.

It’s not about straightening my spine.
Or trying to fix the unfixable curves.

It’s about creating stability in a body that defaults to collapse.
Learning to organise myself differently within a structure that won’t change.

And that’s not easy in a body like mine —
built on connective tissue that doesn’t hold, and reinforced by a long spinal fusion.

Less overcompensating.
Slightly more control.

Subtle shifts.
But hard-earned ones. 🩵🤘🏼🕺🏻😎💥

Proof that even in a fused, complex spine — change is still achievable.

This wouldn’t be possible without my incredible team supporting me — Perth Scoliosis Clinic, Iluka Physio, and Avanti Physiotherapy. I’m so grateful to have you guys in my corner!🙏🏼
[ID: Side-by-side comparison of a woman (me) with Kyphoscoliotic EDS standing against a posture grid, showing Day 1 vs Today. The “Today” image shows improved alignment, with more level shoulders and pelvis, reduced torso twist, and a less prominent rib hump.]
Jayde Walker Rob Walker

My wheels got a wheelie cool upgrade yesterday!This EasyWheel attachment lifts my front castors and replaces them with a...
17/03/2026

My wheels got a wheelie cool upgrade yesterday!

This EasyWheel attachment lifts my front castors and replaces them with a pneumatic tyre — making uneven ground much smoother to explore.

A small attachment.
A lot more places to go. ♿️🤘🏼🩵

Thanks to Wild West Wheelchairs and Authentic Purpose 🙏🏼

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