Mum with rare incurable disease that dislocates her joints multiple times a day becomes plus size model – Ehlers-Danlos syndrome

disorder

mum diagnosed with a rare incurable disease has embarked on a career as a plus size model.

Stephanie Harding, 30, of Southport, says she refuses to let her diagnosis control her life as she battles dislocations including rolling her ankles daily.

She took part in her first professional shoot on Thursday after winning a competition to model a curvy range for a local Merseyside store, Sparkles Boutique.

Mum-of-two Stephanie suffers from Ehlers-Danlos syndrome (EDS), an incurable hereditary disorder which affects the connective tissues in the body, the Southport Visitor reports.

At present, there are few EDS specialists in the UK, and Stephanie wasn’t even diagnosed until last year, despite showing symptoms since birth.

Stephanie Harding (Photo: Sparkles Boutique – Craig Wilko)

She said: “I was constantly tired and/or in pain, I knew something wasn’t right. You know your own body, don’t you?

“But whenever I’d go to the GP, they’d blame my weight or depression. I was made to feel silly and like a hypochondriac.”

EDS, which affects around one in 5,000 people, weakens the tissue that holds the body together.

It causes hypermobility and frequent dislocations of the joints, stretchy skin, problems with internal organs and constant pain.

Stephanie says she suffers dislocations every day as well as “fragile skin” but does not experience the stretchy skin element of the condition.

“My ankles constantly roll daily and I have a permanent hip injury because of it,” she said.

Stephanie, who says she loses entire days of her life due to being “wiped out with pain”, finally saw a specialist in London last year.

She continued: “He made me feel like he believed me, like he understood.

“He told me about EDS and it was like he could read me.

“I know GPs can’t know everything but there are so many people with rare conditions, and they shouldn’t be dismissed.”

Stephanie said she was going to set up a blog combining her love of fashion and beauty with raising awareness for EDS and other “invisible illnesses”, as well as taking part in more fashion photoshoots.

She added: “I loved the photoshoot. It was a massive confidence boost and [local photographer Craig Wilko] was great.

“A year ago I’d never have imagined doing something like this, but there comes a time when you have to stop caring what other people think and just do what you want.”

 

Source:mirror.co.uk

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