Northern Rivers mum’s quest to save herself from debilitating pain

A Northern Rivers mum and academic, who suffers from a rare condition, is trying to get hold of a life-changing suit.

Shana "Pixie" Miller with her daughters Kirra and Aurora.

Every day brings a new struggle for Pearces Creek mum and academic Shana "Pixie" Miller who just wants to achieve her dream of helping others.

Pain medication and specialist help have done almost nothing to soothe the daily chronic pain she suffers as a result of rare genetic condition Ehlers Danlos Syndrome (EDS).

EDS is a connective tissue disorder condition which affects production of the most abundant protein in the body, collagen.

The disorder affects only around 1 in 5000 people but it can lead to joints subluxating (partially dislocating), narcolepsy and hypersensitivity.

Ms Miller said the condition made minor tasks "agony".

"It's like being a contortionist, joints pop out all the time. When I'm in bed, relaxed, my ribs subluxate which makes it hard to breathe," she said.

"There a lot of things I can't do with my kids, and there's a lot of things they have to do to help me out.

"They'll have to sometimes do the cooking or even help me get dressed or tie my hair up.

"It makes me really really frustrated, I don't want to struggle to do the simplest things."

Pixie said the suit would let her focus on her Master studies in Neuroscience.

 

Ms Miller first realised she may have the condition when she learnt about it part of her extensive academic studies into health and neuroscience.

Now the condition may be threatening those same studies.

"I've now been approved for a Master of Neuroscience, and if I'm not in so much pain from day to day tasks, I will be able focus back on studying," she said.

"I've got a lot of big dreams still in spite of my challenges. I want to help people with addiction and depression.

"I just need to keep my health managed so I have a chance of a career."

 

One life-changing solution would be an orthic compression suit, as seen in the above video.

The custom-made suit, gloves and socks would hold her joints in place so they were less likely to pop out.

But at a total of $6136, the likelihood of Ms Miller affording it was slim and she was tired of waiting on the health system or government bodies like NDIS to step up.

It was why Ms Miller had launched her own GoFundMe.

"I'm just exhausted (with the health system)," she said.

"There's so much scrutiny and you have to justify you're sick over and over.

"I can't keep waiting on them forever, because more and more damage will be done to my joints over time."

Only creating the fundraiser a week ago, she had already been overwhelmed by the outpouring of support.

"I can't believe how many people have donated, some people who don't even know me, random people wanting to help, it's quite amazing," she said.

"I was almost in tears."

Ms Miller added if the response could even get one person suffering from EDS to access help it was worth it.

"There is a lack of awareness, and a big delay in getting treatment," she said.

"Not getting treatment only adds to the damage."

Head here to donate to the GoFundMe.

Originally published as Mum's quest to save herself from debilitating pain