How one wrong move could kill woman with rare illness

Yahoo News Australia and agencies
·3-min read

A 27-year-old woman is forced to spend 22 hours a day in bed as one wrong move could cause her to die from a rare illness she suffers

Celeste van Veenen, 27, from the Dutch province of Flevoland, suffers from a rare illness called Ehlers-Danlos syndromes (EDS), a hereditary condition that affects the connective tissue that provide support for skin, bones, blood vessels, and organs.

Celeste’s condition mainly affects her neck and back which forces her to wear a device around her torso to help keep her vertebrae in place.

She also requires an oxygen device next to her bed and is fed through tubes in her stomach and is hooked up to an IV for fluids and medicine. She even has 20 rings to put on her fingers to prevent them from dislocating.

Celeste van Veenen suffers from Ehlers Danlos Syndrome. Source: Newsflash/Australscope
Celeste van Veenen suffers from Ehlers Danlos Syndrome. Source: Newsflash/Australscope

"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 added her illness keeps her in bed for 22 hours every day to prevent putting pressure on her spine, which she said can cause “unbearable” pain.

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

Even 30 minutes at the park requires her to recover for several days due to the strain on her body.

Woman's potentially life-changing surgery

Celeste started raising money for a potentially life-changing surgery that could give her a better quality of life through fundraisers and her foundation.

She has managed to raise her target of $123,000 through her long efforts, which she recently announced on her website

The operation could not have come at a better time as she has growing fears her condition is worsening. She is already on the strongest pain medication available, but is always in pain and even sitting upright is becoming more difficult.

Celeste van Veenen says one wrong move could kill her. Source: Newsflash/Australscope
Celeste van Veenen says one wrong move could kill her. Source: Newsflash/Australscope

“I never know when it could all go wrong, one wrong move and it could be the last one," she told the news site AD.

“I am 27 years old, I want to live. I don't want to choose music for my funeral.”

Despite all her difficulties, the young woman tries to stay positive but admits her social circle is very small as all her childhood friends are off partying, making careers, and starting families. 

“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," she said. 

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

According to her website, she is set to undergo surgery in the Spanish city of Barcelona but there have been no further updates.

Australscope

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