‘We’re not believed,’ says mum who suffers with rare disease and autism

Jane Green. Picture: Steve Robards
Jane Green. Picture: Steve Robards

A mum who suffers with Ehlers-Danlos syndrome (EDS) and autism is trying to raise awareness of the conditions to stop people from being misdiagnosed.

Jane Green, 55, who lives in Copthorne, did not get her EDS diagnosis until she was 52 and discovered she had autism a year later.

We are not believed, doctors just used to say I was bendy.

Jane Green

She lives with her two sons. Her 25-year-old son Joshua also has autism.

She said: “At the age of 52 I was finally diagnosed with Hypermobility Ehlers-Danlos syndrome (hEDS). This is one of the classifications of the EDS syndromes.

“You don’t look ill, you look so young, the doctors said. I am now 54 and I don’t look it. I am not boasting but it is maybe the only benefit advantage I have of hEDS.

“We are not believed, doctors just used to say I was bendy, I was walking across a car park one day and my ankle just fell out.

“I could always do party tricks along with my sister like sitting moving our joints backwards which used to be called double-jointed.

“I didn’t know about EDS – it was only when I went to see a rheumatologist I got the diagnosis.

“When you say EDS you get a blank look, but not when you say MS. You know people aren’t just going to make this up for no reason.”

EDS is a group of rare inherited conditions that affect connective tissue. Connective tissues provide support in skin, tendons, ligaments, blood vessels, internal organs and bones.

Jane was told she was hypermobile. She was also diagnosed with chronic fatigue syndrome (CFS) and fibromyalgia and had to give up work in 2015.

“I want to show that there is a misdiagnosis,” she said.

“EDS is considered a rare disease as at the moment only one out of 500 are diagnosed. It should not be considered as rare and if it was better diagnosed it would be more around one out of 70.”

Jane said her autism diagnosis did not come as a shock.

“As a child I had some issues but I managed to hide them. I didn’t look or come across as anxious – I did not present classically,” she said.

Autism is a lifelong developmental disability that affects how people perceive the world and interact.

Jane volunteers as an area co-ordinator for Ehlers-Danlos Support UK.

She also has a psychology degree, which she took on at home to learn more about autism.

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