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Monday, November 11, 2019
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The woman who risks ‘internal decapitation’ every time she moves her body

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A young Perth woman who risks internal decapitation every time she moves is desperate for life-changing surgery.

Erin Meegan has a rare condition that means her skull is slowly sliding down her neck and crushing her spine.

Watch the video above.

She’s living in a body that could simply “snap” at any moment.

She’s unable to get out of bed, unable to leave her room – but her life wasn’t always like this.

The 34-year-old had married Isaac, the love of her life, in 2015.

They travelled and loved going on adventures, but that all changed when Erin’s health began to deteriorate in 2017.

Eventually, after many tests and an initial diagnosis of chronic fatigue syndrome, Erin was diagnosed with a rare condition called Hyper-Mobility Spectrum Disorder (HMSD).

Erin and Isaac on their wedding day.
Erin and Isaac on their wedding day. Credit: GoFundMe

HMSD is a connective tissue disorder which affects collagen production, leading to loose joints, ligaments, blood vessels and weak tissues.

Now, she’s in constant pain.

The joints between her vertebrae are weakening. Her skull is, quite literally, sliding down her neck and slowly crushing her spine.

One wrong move will lead to what doctors call internal decapitation; just sitting up could kill her.

Erin is confined to bed and often suffers severe headaches, nausea and other symptoms.
Erin is confined to bed and often suffers severe headaches, nausea and other symptoms. Credit: GoFundMe

“That compression causes severe headaches, fatigue, pins and needles, vomiting, just a general sense of nausea,” Isaac told 7NEWS.

Her only hope is life-changing surgery. She wants to go to one of the world’s few specialists in Barcelona.

More on 7NEWS.com.au:

But it’s not free – the couple need to raise $100,000 by November 1.

Isaac has launched a GoFundMe campaign to help get Erin there.

“Erin now spends well over 20 hours a day lying down and is in constant pain,” he wrote.

“To avoid further damage, worsening symptoms and dislocation of her neck, she has to use a cervical collar to aid immobilisation.

“Erin will need to have her neck and skull fused with titanium pins to create the column of support necessary to remove the compression of her brain stem, jugular veins, stop the sliding of her skull and the dislocation of her neck.

Isaac is desperate for Erin to get her quality of life back.
Isaac is desperate for Erin to get her quality of life back. Credit: GoFundMe

“She will lose up to 100 per cent mobility of her neck, but this is a small price to pay given her horrific quality of life.”

Erin told 7NEWS the possibility of surgery in Barcelona is “the light at the end of the tunnel.”

“The surgery to me is a big beacon of hope,” she said.

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