South Wales Echo

Mystery of illness which sees mum’s body contort and paralyse

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develops in reaction to previous drug exposure.

The mother of one has shared her story: “On October 6 (2015) my world was turned upside down when I was rushed to hospital with stroke-like symptoms.

“I was in extreme pain all down the left side of my face, my eye and eyebrow had dropped and I could barely open my eye. When I got to the hospital I failed to pass the simple smiling test. I felt confused and had a strange feeling I was outside of my body.”

Lauren’s condition began deteriorat­ing and she started to feel extremely weak. It eventually led to her being unable to walk without assistance.

“Before I knew it I was unable to walk. My legs were stuck in a bent position. I could barely walk without the help of a nurse, family member or a wheelchair.

“I wondered if I would end up having to sit in a chair for the rest of my life.”

Lauren underwent an MRI scan, two CT scans and several painful lumbar punctures. But she was left none the wiser. “The months that followed were the hardest times of my life,” she said.

“I have had weeks where I’m unable to get out of bed because of the attacks.

“And every single day I felt so exhausted I could cry – sometimes I did. Some days it would happen 20 or 30 times a day.”

It was initially suggested that Lauren could be suffering with hemiplegic migraines (hemiplegic means paralysis on one side of the body), but other medical profession­als were so puzzled by her condition they thought she might be suffering from mental health issues.

Lauren was eventually referred to a Parkinson’s specialist, who suggested she may be suffering from a form of dystonia, a movement disorder in which a person’s muscles contract uncontroll­ably.

“There’s all different kinds of it,” Lauren said. “Mine is a very rare case – doctors think I may have up to three or four kinds of it.”

She added: “When you look up dystonia, it says the condition can be genetic and can lie dormant.

“But there’s a chance it can be triggered as a delayed reaction to taking drugs or suffering a trauma.”

Lauren says she’s always been “completely honest” about her drug taking – which started at the age of 13 and included taking “Ecstasy, powder, amphetamin­es and weed”.

“Things at home weren’t good – I had moved away from Coventry to the Valleys,” she said, adding: “I’m not one to blame other people. I took those drugs myself.”

Lauren stopped taking drugs at 19, following the birth of her daughter Keria – who’s now seven.

“When I fell pregnant, I turned my life around.

“But that’s the scariest thing for me now – not knowing if it’s genetic and whether I have passed the condition to my daughter.

“I wouldn’t have any more children now, as I wouldn’t be able to forgive myself if I had to watch my children suffer through something I have.”

Since her last consultati­on, Lauren says the attacks have become less frequent, but are becoming increasing­ly harder to deal with.

“I now get paralysis from the neck, or sometimes the hip, down. I can’t move and often wet myself.”

The condition became so difficult that Lauren suffered a deep depres- sion and she tried to overdose.

“It made me question myself – am I making this up? Am I mad?”

Lauren is now learning to cope with the condition, and says she has “good days and bad days”.

Describing the attacks, she said: “If this was the 1800s I would be burnt at the stake – I look possessed. My whole body is distorted and twists into positions you couldn’t even imagine.”

She added: “Sometimes I’m in bed for a week. But there’s no pattern to it. I had an attack at my daughter’s Christmas concert and when I was taking her to school. It’s really affecting my life.”

But Lauren says she’s determined not to let the condition take over.

“It makes me nervous to go out – but I’m determined. I get up, I put my makeup on and I go out. I can’t stay in and watch my life pass me by.”

Lauren’s consultant has now asked her to document her attacks by taking videos and pictures. She says there’s a chance she may have to undergo open brain surgery in London.

Lauren has also spoken about her experience on social media in the hope of helping others who may be going through similar experience­s.

She added: “I’d love to use my experience with this horrible condition to help others who suffer. I’d love to set up a charity to do that.

“After all the hell I’ve been through – I just want to get something good out of it by helping others.”

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