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Woman Forced To Spend 22 Hours A Day In Bed Due To Rare Condition

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Woman Forced To Spend 22 Hours A Day In Bed Due To Rare Condition

A woman who has to spend 22 hours a day in bed as one wrong move could kill her has raised enough money to get a life-changing operation.

Celeste van Veenen, 27, has a rare condition called Ehlers-Danlos syndromes (EDS) - an hereditary condition affecting the connective tissue that provides support for skin, bones, blood vessels and organs.

Credit: Newsflash
Credit: Newsflash

In Celeste's case, the condition mainly affects her neck and back, meaning she has to wear a special device around her torso to keep her vertebra in place.

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She also has to be fed through tubes in her stomach, while having IV drips for fluids and medicine.

Celeste, from Dronten in the Netherlands, also wears 20 rings on her fingers to stop the digits from moving around and dislocating.

Her illness keeps her bed bound for 22 hours a day to help prevent the 'unbearable pain' caused by pressure of her spine.

Celeste told Dutch news outlet AD: "I try to keep my body working in all kinds of ways, but I don't know how long I can keep this up, physically and mentally.

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"I never know when it could all go wrong - one wrong move and it could be the last one.

"I am 27 years old, I want to live.

"I don't want to choose music for my funeral."

Credit: Newsflash
Credit: Newsflash
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Celeste says she tries to remain as upbeat as possible, but admits that she finds it hard when she sees other people her age living normal lives.

She added: "I can get pretty sad about that but I understand. You want to interact with people you have a connection with, to talk about what you are experiencing.

"My life consists of lying in bed, watching movies and series, and a lot of medical hassle."

She's also sensitive to sunlight, so spends most of her time in the dark to avoid migraines.

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Celeste fears her condition is worsening and is left in constant pain despite being on 'the strongest pain medication available'.

Credit: Newsflash
Credit: Newsflash

Thankfully, it seems as though there's a glimmer of hope in Celeste's future after a crowdfunding campaign she set up to get a potentially life-changing operation has hit its target of €80,000 (£68,000).

According to her crowdfunding page, Celeste will fly to Barcelona in Spain for her operation but, as yet, has not announced when the surgery will be taking place.

Featured Image Credit: Newsflash

Topics: World News, Health

Claire Reid
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