The Rijswijk Suzanne van Schendel is only 31 years and lies in bed all day. It may sound relaxed for a day of chilling, but it’s different if you can’t get out. Suzanne can’t even sit up straight. She has Ehlers-Danlos Syndrome (EDS), a genetic connective tissue disorder. “For years I was told I had a burnout.”

Suzanne is very creative, she played the saxophone, made jewelry, joined a drama club and often went to the gym. She also had a full-time job: growing seedlings at the family business and helping others with it. She can’t do all that anymore.

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Suzanne, photo private

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“I only got on my 150e diagnosed with EDS, while it is a genetic condition. So I’ve had it since I was born. All my life I was different from others, I just didn’t know why. I was not taken seriously by doctors, not by teachers and not by those around me. I was quickly overstimulated and tired. I’m quite smart, but because of all those complaints I couldn’t finish university.”

Ehlers-Danlos syndrome (EDS) is a congenital and hereditary disorder in which the connective tissue is not properly constructed. Connective tissue is the glue that keeps bones and joints in place, for example. In people with this syndrome, joints quickly dislocate. The muscles are weaker, so learning to walk and sit takes longer in children.

And that’s not all. Suzanne has Cranio Cervical Instability (CCI)

due to the syndrome. As a result, her neck is unstable. “I keep losing consciousness, have seizures, motor problems and symptoms of loss of consciousness.”

This condition is relatively unknown in the Netherlands. For the diagnosis, the Rijswijkse had to go to Barcelona where they have the right equipment. “I was told for years that I ‘just’ had a burnout, was depressed, couldn’t have that much, or that it was because of my excess weight. But all the while I was walking around with a dangerously unstable neck.”

Everyday life

From a busy life full of hobbies, to days in bed. “I don’t have any friends left, because I get overstimulated very quickly, even by the presence of people. I did make new friends online. I also cuddle a lot with my sweet cat Teigr. I like to write and have an Instagram page which used to be my hobby (@livingfoodlove ), but which is becoming less and less successful these days.”

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Suzanne with her cat. Photo Private

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Now what?

“It’s going badly, I can only lie in bed, when I sit my brain does not get enough blood and oxygen. In addition, I have a lot of pain and my nervous system is completely disrupted,” Suzanne tells us. But luckily life is not hopeless, after this interview we received good news. Yesterday she could finally have surgery in Spain.

“After the operation I can walk normally again and keep my neck upright, think clearly again and communicate well. Hopefully I will get out of my social isolation and be able to participate in real life again. Going out in itself will be great!”

Suzanne, photo private

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