Real-life 'sleeping beauty' who sleeps for 22 hours a day diagnosed with another rare condition

Beth Goodier suffers from Kleine-Levin Syndrome (KLS) a neurological condition otherwise known as Sleeping Beauty syndrome. Photo / Facebook

A real-life "sleeping beauty" who barely remembers the last eight years is now facing another rare illness that could dislocate her neck at any time.

Beth Goodier, 25, from Stockport in the UK, suffers from Kleine-Levin Syndrome (KLS), an extremely rare neurological condition that causes her to sleep up to 22 hours per day.

She is now battling Hypermobile Ehlers Danlos Syndrome (EDS), an inherited connective tissue disorder affecting collagen – the "glue" that holds the body together.

View this post on Instagram

Hello I’ve not been doing too well. 😷🤕 My spine is unstable in various parts which basically means my vertebrae move out of place (dislocate) and press on my spinal chord. I’ve been having a lot of trouble especially the past few days. I’m hopefully meeting with a spinal surgeon soon and I just wanted to update you all. 👩🏼‍⚕️👨🏽‍⚕️

A post shared by Beth Goodier (Roo) (@wheelyroo) on Aug 16, 2018 at 8:00am PDT

Ms Goodier was diagnosed with EDS in 2016. According to her mother Janine, it means "severe daily pain, limited mobility, frequent joint subluxations, prolapses, severe digestive problems and now, most seriously, instability of her spine".

"My brain is literally falling out of my head," Ms Goodier wrote on Instagram.

"I'm in desperate need of an operation to save my life. My spine is unstable in various parts including my neck. My neck dislocates and presses on my spinal chord. My brain is also falling out of my skull and into my spinal canal."

According to Janine, Beth was a sporty teenager before developing KLS and had a lot of muscle, which she thinks helped "hold her body together" and mask her EDS.

But as her muscles wasted away, the EDS began to have a catastrophic effect on her health. In the past 12 months, she had been confined to a wheelchair and now rarely leaves the house.

"The impact on her life is huge. Before she deteriorated with the EDS, she'd have her episodes of KLS, but outside of that, she'd be able to go to the gym, or out with friends. She could live as normal a life as possible," Janine told The Daily Mail.

"Now, especially in the past year, she has just deteriorated. It's actually unbelievable the person she was, her life, to what it is now. She not often out of bed. During episodes, she's in bed anyway, but even now, outside of episodes she's in bed."

The family is now trying to raise £100,000 ($202,000) to travel to Spain for specialist medical treatment, not available in the UK.

According to Ms Goodier, her doctors believe her neck dislocating is causing her arteries to be trapped. "The doctors already think I have had multiple mini-strokes which means I'm heading in the right direction for a full-blown stroke," she said.

"Obviously these are very dangerous and debilitating and I'm living in excruciating pain every day. I need a spinal fusion at multiple parts on my spine and possibly will need my veins stunting."

Ms Goodier said her condition had rapidly deteriorated within the past year and her doctors have told her it will continue to deteriorate unless she has the operation.

"Beth's neck urgently needs stabilising. She currently wears a hard neck brace to help minimise these risks as much as this allows but this is not a cure or a permanent fix," her mother wrote on the fundraising page.

"The only way to stabilise her neck is surgery. The surgery she has been recommended as needing is occipitocervical posterior fusion stabilisation with intraoperative reduction (traction)."

The fundraiser has currently raised more than £9000 ($34,200).