'I spend 22 hours a day in bed because one wrong move could kill me'

A 27-year-old woman with a rare disease says she spends 22 hours a day in bed because one wrong move could kill her.

Celeste van Veenen, who lives in Dronten in the Dutch province of Flevoland, suffers from Ehlers-Danlos Syndrome (EDS), a hereditary disease that affects connective tissue and supports skin, bones, blood vessels and organs.

Her condition mainly affects her neck and back, forcing her to wear a device around her torso to hold her vertebrae in place.

She also needs an oxygen machine next to her bed, is fed through tubes in her stomach, and is connected to an IV for fluids and medication.

She even has 20 rings on her fingers to keep them from shifting.

She said that her illness kept her in bed 22 hours a day to prevent pressure from being put on her spine, which can cause “excruciating” pain.

Celeste told the news site DISPLAY: “I never know when everything could go wrong, one wrong move and it could be the last.

“I am 27 years old and I want to live. I don’t want to choose music for my funeral. “

Celeste raised enough money for a potentially life-changing operation.

She began raising money for surgeries that could give her a better quality of life through fundraisers and her foundation.

And she has managed to hit her goal of € 80,000 (£ 68,167) through her long efforts that she recently announced your website.

The surgery couldn’t have come at a better time as she has growing fears that her condition will get worse.

Celeste van Veenen (27)

She is already taking the strongest pain relievers available but is always in agony and even sitting is becoming increasingly difficult.

Celeste said, “I try to keep my body going in a variety of ways, but I don’t know how long I can keep going physically and mentally.”

She spends most of her day in her bedroom, which she keeps dark as too much sunlight can cause migraines.

Even 30 minutes in the park requires her to rest for a few days from the stress on her body.

'I spend 22 hours a day in bed because one wrong move could kill me' 1

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Despite all of her difficulties, Celeste tries to stay positive, but admits that her social circle is very small as all childhood friends celebrate, pursue careers, and raise families.

She said, “I can get pretty sad about it, but I understand. You want to interact with people you have a connection with to talk about what you are experiencing.

“My life is lying in bed, watching movies and series, and getting into a lot of medical trouble.”

According to her website, she is due to have an operation in Barcelona, ​​Spain.


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