Scoliosis & Ehlers-Danlos Syndrome Awareness

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.]

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

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

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 🙏🏼

12/03/2026

Some conditions arrive loudly.
Mine didn’t.

It lived in the background for decades — relatively silent, structural, woven through my body before anyone knew its name.

Often hidden.
Completely misunderstood.

Kyphoscoliotic Ehlers-Danlos Syndrome.

It was the final piece of a puzzle no one realised we were assembling. 🧩

Sharing its full impact is hard —
at least not without keeping some walls up.

For most of my life, it was understood in fragments.

Pediatric migraines.
Severe scoliosis.
Chiari malformation.
Overexertion.
Chronic pain.
Insomnia.
Anxiety.
Depression.

A body that just needed to try harder.
So I did.

I threw myself at life like someone trying to outrun a clock.
Music journalism, late nights, festivals, movement, noise.
If something was worth doing, it was worth doing to the absolute edge. 🎶 💥

Partly ambition.
Partly the stubborn awareness that my body never played by the same rules as everyone else’s.

When you spend your childhood in hospitals and recovery rooms, adulthood becomes something you live at full volume.
You don’t ease into it — you dive straight in.
Head first.

Years passed — adjusting, adapting, compensating.
Learning to push through things no one could see.

Until pushing stopped working.

There is a particular grief that comes with invisible disabilities.

Not the dramatic kind people recognise.
The slower kind.

The kind where pieces of your identity fall away quietly while the outside world continues as if nothing has changed.

Jobs you can’t hold the same way.
Joints that move where they shouldn’t.
Energy that disappears without warning.
Breath that never reaches the bottom of your lungs.

The slow, relentless slide of structural instability. 💔

For decades doctors didn’t dig deeper.

When the diagnosis finally came at thirty-six, it didn’t feel like victory.

It felt like recognition — and a stubborn resistance to what it meant.

Like a pattern finally emerging after years of confusion.

The ribs and hips that slip.
Exhaustion that sleep can’t fix.
A nervous system that misfires when gravity gets involved.
Freakishly flexible limbs.
Velvet skin that bruises easily.
A spine that twists.

Suddenly the pieces made sense. 🧩

Living with a connective tissue disorder means the ground beneath you is never fully stable.
Not structurally. Not neurologically.
Sometimes not even metabolically.

Your body becomes an unpredictable.
Wild and shifting — like the ocean. 🌊

Invisible disabilities rearrange your sense of self.
My identity has fragmented, and I’ve left pieces of myself like breadcrumbs, scattered at each step.

The losses still echo.
The ‘befores’ are tender bruises I can’t stop pressing.
The potential of a body that might have existed under different biology.

There’s no prosthetic for that.
But there is something else.

Curiosity. ✨

The same instinct that keeps asking why when the answers don’t line up.
The instinct that keeps searching for the deeper mechanism.
The instinct that has always fuelled me. 🔥

I used to think my best days were the ones where I pushed the hardest.

Now they’re the quieter, meaningful moments. 😍

Music and movies with my husband.
Sunsets by the ocean.
Dinner dates.
Sitting with a friend.
Allowing presence in places, and with people, where my body doesn’t need to fight quite so loudly.

Not pretending the grief isn’t there.
But also not letting it write the whole story. 📖

I have buried many versions of myself.
But I’m still here.
Still curious.
Still writing.
Still learning the physics of a bendy body that was built differently.

Six months ago, that learning meant becoming an ambulatory wheelchair user — and discovering a new kind of freedom I never expected. ♿️

Turns out it wasn’t defeat.
Just better mechanics. ❤️🤘🏼
[ID: Silhouette of a woman in a wheelchair sitting on a wooden boardwalk, watching the ocean at sunset. The sky glows orange and gold, and the sun reflects across the water.]

04/02/2026

Well said. ❤️🤘🏼🦓
This is why I share my story.
It’s part of the reason why I’m writing a book…

Advocacy isn't a hobby. It’s a survival skill. 🛡️
​Happy .
If you scroll through the hashtag, you will see thousands of us sharing facts, diagrams, and stories.
To the outside world, it might look like we are "obsessed" with our illness.
​But the truth is: None of us wanted to be experts in this.
​I didn't go to university to study "How to convince a doctor I'm in pain."
I didn't plan to memorize the anatomy of my own collagen or the mechanics of my ligaments.
I learned because I had to.
​The "Burden of Proof" ⚖️
For Rare Disease patients, the burden of proof is always on us.
​We have to print out the research papers.
​We have to explain the comorbidity (like MALS or CCI) to the specialist.
​We have to gently correct the person holding the needle.
​Why we advocate:
We don't post these things for "likes." We post them so the next person doesn't have to wait 10 years for a diagnosis.
We advocate to build a bridge over the gap where we fell in.
​To the "Micro-Advocates":
You are an advocate every time you:
​Say "No, that hurts" in a physio session.
​Ask a doctor to "Please document your refusal in my chart."
​Rest when your body screams "Stop."
​You are changing the system, one appointment at a time.
​👇 Tag someone who has helped you find your voice.
​

03/02/2026

That’s a wrap! Two weeks of wheelchair skills training done — and while it absolutely wiped me, it was wheelie fun learning new skills and tricks. ♿️

The course isn’t compulsory — but honestly, it should be. The skills you learn are invaluable for building confidence, safety, and independence in your chair. While it’s not suitable for every disability or wheelchair setup, the training is thoughtfully tailored to your body, your chair, and your individual limitations.

If you use a wheelchair and have NDIS, it’s worth asking your OT or support coordinator about skills training and whether it fits within your plan. That way you can get it funded.

For something that directly improves independence, mobility, and community access, it deserves far more visibility than it gets. The 4 session course is a lot of fun, a good challenge, and very informative.🍾🤘🏼

Huge thanks to Emma, Peter, and the team at Wild West Wheelchairs for their patience, expertise, and laughs. And also to my awesome husband and support workers for getting involved and cheering me on too! ❤️🙏🏼

I’m rolling away with more practical skills, greater confidence, and a much better understanding of what my chair — and I — can handle.

And yes… my wheelies are pretty good too. 😉
Wheelchair Skills Australia

31/01/2026

Today is International Day of the Zebra. On this day, while the world celebrates the beauty of these stripy creatures, we bendy bodies celebrate our own zebra dazzle. ✨🦓

The zebra represents rare diseases such as Ehlers-Danlos Syndrome and Hypermobility Spectrum Disorders.

It comes from a common phrase in medical school - “when you hear hoofbeats, think horses not zebras” - where zebras are the rare, or rarely diagnosed disorders.

Doctors are taught to look first for the simplest explanation, rather than the rare or unusual one.

But we know zebras DO exist! 🦓

Sometimes when you hear hoofbeats it really is a zebra, not a horse. As a result, far too many of us with chronic, multisystemic conditions spend years searching for answers — and being let down by the medical system. 💔

The stripes of a zebra are as unique as fingerprints.

Just as no two zebras have identical stripes, no two people with EDS or HSD are identical. We have different types, different symptoms, and different experiences — making it extremely hard for health professionals to recognise our condition.

Zebras are a symbol of strength, individuality, and bravery. Like many of us living with rare conditions, zebras are survivors and learn to navigate life with resilience. We are wild and untamable, and remain determined in the face of adversity.

The stripes are also seen as a reflection of the various shades of life, such as yin and yang, light and darkness, and good and evil. ☯️

Living with a rare disability isn’t easy and the pathways to care are expensive and difficult to navigate. Support and awareness is vital.

A group of zebras is called a dazzle. Together we are stronger, together we dazzle. ✨

Happy Day of the Zebra! 🩶🦓
[ID: A black and white image of three zebras].

21/01/2026

Yesterday we learnt kerb jumps! This allows me to safely get over medium-size kerbs without assistance 😎♿️🤘🏼

Looks easy, but timing and technique are essential for a smooth landing (and to avoid being flung forward out of your chair, which thankfully I didn’t do!)
Wheelchair Skills Australia Wild West Wheelchairs

15/01/2026

Having a wheelie good time at Wild West Wheelchairs’ skills training!

After learning the basics with manual wheels on Tuesday, today I learnt wheelies in powered mode which is much easier on my bendy body.

While popping wheelies is A LOT of fun (albeit definitely daunting and difficult at first!), these are the essential skills needed to safely navigate barriers and obstacles such as kerbs, ramps, and uneven ground while out and about ♿️

Never did I think I’d be able to pull this off after 4 months as an ambulatory wheelchair user, but here I am and couldn’t be more proud of my progress.

Looking forward to more tricks, tools and laughs with Emma and Peter next week. 😎🙏🏼💚🤘🏼
Wheelchair Skills Australia Jayde Walker

06/01/2026

First hydrotherapy session for 2026 😎
Legs are a little wobbly! But it felt good to get back into the water 💦

Avanti Physiotherapy

01/01/2026

🤣🤦🏻‍♀️🤘🏼

EDS Zebra Memes