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A woman with a rare illness spends 22 hours a day in bed because making a wrong move could kill her.
Celeste van Veenen, 27, of Dronten in the Netherlands, suffers from Ehlers-Danlos syndromes.
The hereditary condition affects the connective tissue that provides support for skin, bones, blood vessels, and organs.
Her illness mainly affects her neck and back which forces her to wear a device around her torso to keep her vertebrae in place.
She requires an oxygen device next to her bed, is fed through tubes in her stomach and is hooked up to an IV for fluids and medicine.
And she even has 20 rings for her fingers to prevent them from dislocating.
Celeste said: "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."
She said she spends most of the day in bed to prevent putting pressure on her spine, which can cause "unbearable" pain.
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The room has to be kept dark as too much sunlight can cause migraines.
Spending just 30 minutes at the park is followed by several days recovering due to the strain on her body.
She recently managed to raise £68,000 (€80,000) for potentially life-changing surgery that could give her a better quality of life.
The operation was described on her website as one to fix the upper vertebrae and the skull in the correct position.
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This potential breakthrough comes as she admitted she has growing fears her condition is worsening.
Despite being on the strongest pain medication available, she says she is always in pain and even sitting upright is becoming more difficult.
She told the news site AD: "I never know when it could all go wrong, one wrong move and it could be the last one.
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"I am 27-years-old, I want to live. I don't want to choose music for my funeral."
She admitted it is hard seeing her childhood friends partying, making careers and starting families while she has a small social circle.
Celeste said: "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 is reportedly set to have surgery in Barcelona, Spain after the money was raised, although no date has been given.
- In the News
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