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Meet Hayley - the model determined not to let ME ruin her life

PUBLISHED: 11:07 11 February 2015 | UPDATED: 12:29 11 February 2015

Hayley-Eszti Szucs who has become a model despite being struck down with ME.

Hayley-Eszti Szucs who has become a model despite being struck down with ME.

Waking up one morning paralysed by a mysterious illness, Hayley-Eszti Szucs was terrified.

But even after being diagnosed with the debilitating ME condition, the 22-year-old of Britten Road, Kirkley, vowed to keep fighting for answers through months of pain –and has now launched a career as a model to help inspire other women with disabilities.

The former Kirkley High School pupil was working as an au pair in Madrid three years ago when she began to feel tired but brushed it off, thinking it must be the heat.

“One day I was fine, normal,” she said. “The next day I couldn’t move. I was having a seizure, I had lost control of the left side of my body, I couldn’t talk.”

Rushed to hospital, she was tested for brain damage as doctors feared the worst.

All the tests came back negative, but her condition still did not improve.

After just a week in hospital, she was discharged but was still not strong enough to walk from the waiting room to the car.

Too unwell to get back to England, she was trapped in Spain with no idea what was wrong with her – or how long it might last.

“My speech and sight came back, but it was in and out,” she said. “It lasted for months and months. I just had to stay in Madrid and hope it would pass.”

By spring 2012, still in a lot of pain and losing consciousness, Miss Szucs made it back to England.

Suffering anything up to 20 seizures a day which would sometimes cause her to stop breathing, she was constantly monitored by friends and family – but the worst was yet to come.

“I lost my memories,” she said. “It got serious. I couldn’t remember things. I couldn’t remember my family. I couldn’t move from bed. I was paralysed and I was in so much pain.”

Miss Szucs felt so bad that: “I thought maybe it was best if I just passed away in my sleep. I couldn’t cope with it anymore.”

It took another year for a neurologist at the Norfolk and Norwich University Hospital (NNUH) to diagnose her with ME, although the reason for her seizures is still unexplained.

“My specialist told me I had one of the most severe cases she had ever seen and she said there was nothing they could do,” Miss Szucs said. “No cure, no medication.

“I was glad I finally had answers, but I didn’t want to have this illness where I knew there was no treatment.

“I thought: ‘Is this what it’s going to be like forever?’ and I didn’t want it to be. I wanted to have a normal life.”

Eventually she came to terms with the diagnosis and learned how to cope with the illness, resting for a few days in preparation for any trips out and balancing activity with rest.

Her only escape was a blog she wrote to keep her love of fashion alive – and posting pictures of her daily outfits while in her wheelchair generated a reaction she had never expected.

“Normal girls that like fashion were saying it was good to see people in wheelchairs embracing fashion,” she said.

“I felt like I didn’t get a lot of support from the medical field, and all of a sudden I had all this support through my blog – it was really overwhelming.”

Friends contacted her to see if she would be interested in modelling. Although Miss Szucs is not confined to her wheelchair, she felt strongly about including it in her modelling.

“We need to have models who are in wheelchairs,” she said. “It’s important because disabled people need to have people they can look up to and relate to.

“People have this idea of ME that it’s just getting tired, but it’s such a complex condition – it’s debilitating. “It ruins peoples’ lives but I’m determined not to let it ruin mine.”

What do you think of Miss Szucs’ story? Write, giving your full contact details, to: The Letters Editor, EDP, Prospect House, Rouen Road, Norwich, NR1 1RE or email EDPLetters@archant.co.uk

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