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Teenager Battling Rare Condition That Makes Her Skin Feel 'Eternally On Fire'

Teenager Battling Rare Condition That Makes Her Skin Feel 'Eternally On Fire'

When Moana Ruhfass sprained her ankle as an 11-year-old, nobody thought the injury would mean anything more than a few weeks off the athletics track.

However, her pain only got worse as time went by, spreading up to her shoulder.

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In 2013, doctors diagnosed Moana with Chronic Regional Pain Syndrome (CRPS), a neurological malfunction of the central nervous system that results in burning, stabbing, shooting and throbbing pain.

Moana's condition made her wheelchair-bound. Credit: Go Fund Me
Moana's condition made her wheelchair-bound. Credit: Go Fund Me

The agony CRPS sufferers endure is said to be worse than childbirth and Moana, from Australia, compares it to feeling 'eternally on fire'; she also regularly suffers non-epileptic seizures that can last three-and-a-half hours.

Speaking to the Daily Mail, she said: "I also feel pain like someone is constantly stabbing me, pain like it's lightning striking and painful pins and needles.

"It can get to the point where I can't even stand the wind on my skin or moving at all. I sometimes can't even shower my foot because even a drop of water would have me screaming.

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"I have good and bad days. On my good days I still have constant pain but I get used to it and manage it. But on my bad days I can't even bear someone touching me. The weight of a blanket and lying down hurts but it's better than being on my feet."

At one stage, Moana's condition became so debilitating that she had to use a wheelchair and her family decided to move to Sydney so she could access the children's hospital's physiotherapy programme.

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There she spent 10 hours a day receiving agonising treatment, as therapists attempted to reset her neural pathways.

While their work helped her to walk once again, she still lives in constant pain and is only able to attend school twice a week for a few hours at a time.

Moana's physio helped her to walk again. Credit: Go Fund Me
Moana's physio helped her to walk again. Credit: Go Fund Me

She said: "I'm way behind on my education and I'm not able to concentrate, to study or keep up in class because of my pain and low concentration.

"I get stressed a lot in school, I get easily tired and my pain gets worse for it and it wears me down. I get panic attacks about every time I'm at school due to the stress of it and the pain.

"Every teacher and some of my classmates are very cautious with me and kind of scared that something's going to happen and I really hate that they're treating me like I'm going to break.

"Most of the days of of the week are bad days for me, that's when I'm confined in bed and the rest of the days that might be good I try to go to school."

The family are now hoping to raise AUD $65,000 (£34,580) for a 12-week therapy programme at the Spero Clinic in Arkansas, USA.

The family say the clinic has successfully treated five Australian children in the last year and they believe the programme represents their 'last chance for Moana'.

You can find out more and donate here.

Featured Image Credit: Go Fund Me

Topics: Interesting, Community, Australia, Health

Jake Massey

Jake Massey is a journalist at LADbible. He graduated from Newcastle University, where he learnt a bit about media and a lot about living without heating. After spending a few years in Australia and New Zealand, Jake secured a role at an obscure radio station in Norwich, inadvertently becoming a real-life Alan Partridge in the process. From there, Jake became a reporter at the Eastern Daily Press. Jake enjoys playing football, listening to music and writing about himself in the third person.