The 25-year-old woman whose story previously went viral because she suffers from an extreme form of ‘Sleeping Beauty’ syndrome has now been diagnosed with yet another dangerous condition.
Greater Manchester-based Beth Goodier has been living with Kleine-Levin Syndrome since she was 17 years old. The neurological disorder causes her to sleep for up to 22 hours per day and sometimes several days in a row.
In addition, the KLS limits the woman’s chance at living a normal life as it renders her unable to recollect memories deriving from the last 8 years.
Now, Beth has been diagnosed with another deadly syndrome called Hypermobile Ehlers Danlos Syndrome or EDS for short.
The condition that affects connective tissue has caused Beth’s spine to become unstable, meaning that her neck could snap at any instant. On top of that, Beth’s brain began collapsing onto her spinal cord whereas her neck veins are at risk of getting smashed by her own bones.
“It’s like someone has pressed pause on my life. Most of my friends have moved out of their parents’ to other cities but I can’t,” the young woman previously said in an interview with Caters News.
“When an episode hits I need mum to look after me constantly. That’s what really annoys me about it being called ‘Sleeping Beauty’ syndrome, like it’s some sort of fairy-tale. It’s really not – I feel like KLS is stealing my youth.”
Now that Beth was struck with another tragical condition, the family is hoping to raise $120,000 for a surgery that could save her life.
Speaking of her daughter’s condition in another interview, mother Janine said:
“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.
“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.”
As the mother added, the family needs to get through with the surgery as soon as possible to save Beth’s life.
“We don’t like to think about where that might end. We know her brain is sagging. We know she could wake up one morning and find she’s had a stroke,” Janine added. “At the moment it’s just a huge amount of money to raise and we don’t know how it’s going to be achieved.”
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