Man with stiff person syndrome ‘freezes like a statue’ without notice

Ian Rawlins, 58 and pictured here with wife Andrea, has had the condition for around 18 years (Image: SWNS)

A truck driver’s wife has revealed what it’s really like to live with the one-in-a-million disease, stiff-person syndrome.

The rare condition became public knowledge since singer Celine Dion was forced to postpone her upcoming tour dates after being diagnosed with the syndrome.

Known as SPS, it’s a rare autoimmune movement disorder that affects the central nervous system – the brain and spinal cord.

Andrea Rawlins shared videos of her husband Ian, 58, writhing in pain from cramps due to the condition he has had for around 18 years.

“It’s called stiff person syndrome because apart from the cramps you basically become like a statue in your own body,” said the 54-year-old from Barnsley, South Yorkshire.

“If he’s been moving around the house and suddenly sees me out of the corner of his eye, there can be two ways.

“Either he freezes completely like a statue and can’t move for 20 to 30 minutes, or he immediately goes into a convulsion that can last for hours.

“It can be very difficult to administer medication as his jaw sometimes becomes blocked and his teeth clenched.”

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He was only diagnosed with the disease three years ago, although he’s had it for much longer (Image: SWNS)

Before his illness, Ian was incredibly into motorcycles and competed in trials around the world – he even appeared on BBC One’s Kick Start programme.

But around 2005, he started experiencing severe pain and stiffness in his legs, and then he was diagnosed with gluten ataxia, a form of celiac disease.

Unfortunately, his symptoms worsened, forcing him to quit his job, and it wasn’t until about three years ago that doctors finally realized he had stiff person syndrome.

Now Ian’s condition has deteriorated so badly that he is experiencing a whole host of troubling traits linked to the rare condition every day.

The mother-of-two said Ian’s health deteriorated so badly over the Christmas period that she was forced to call an ambulance who came to her house.

However, she explained that the paramedics who arrived were not sure how to treat him due to the rarity of the condition, which only affects one or two in a million.

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Andrea wants to raise awareness about stiff person syndrome (Image: SWNS)


What is stiff person syndrome?

According to the National Institute of Neurological Disorders and Stroke in the US, stiff person syndrome (SPS) is a rare, progressive neurological disorder.

Symptoms can include stiff muscles in the trunk, arms, and legs, and greater sensitivity to sound, touch, and emotional stress, which can trigger muscle spasms. Many people with this condition fall frequently and may develop abnormal, hunched postures.

Scientists don’t yet understand what causes SPS, but research suggests it’s the result of an autoimmune response gone wrong in the brain and spinal cord.

SPS affects twice as many women as men and is often misdiagnosed as Parkinson’s disease, multiple sclerosis (MS), fibromyalgia, or anxiety. It is usually treated through the use of muscle relaxants and medications that prevent muscle spasms.

“He had a really bad seizure on Christmas Day, a really bad seizure on Boxing Day, a really bad seizure the day after,” she said. “The more cramps he has, the harder it gets.

“It’s very difficult because you can’t touch a person who’s convulsing because it makes the symptoms worse. It can dislocate bones, tear muscles, and tear muscles.”

She said paramedics had to google the condition because they had “never heard of it.”

Andrea added: “I had to explain that you can’t touch him. They called a second rescue team and again, they had never heard of it.

“So there were a lot of phone calls between them and the contact center.”

She warned Celine Dion fans to realize she won’t “get better overnight.”

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Celine Dion was forced to postpone her upcoming tour dates after being diagnosed with stiff person syndrome (Image: AFP via Getty Images)

“People aren’t going to accept at first how much their symptoms are going to escalate,” Andrea said. “Right now people think she’s going to start singing again somehow.

“Depending on the severity of the symptoms, I think she will get worse over time – unless she has a stem cell transplant – which she may have access to.

“I’m not sure how quickly she’s going to escalate, but as it escalates, people will become more and more aware that she doesn’t get better overnight.”

She added that she is pleased that some progress is being made in relation to stiff person syndrome awareness.

“There’s a reluctance from some GPs and doctors that we’ve spoken to in the past,” she said.

“They say, ‘We don’t really need to know anything because it’s such a rare disease.’

“But we’re at the point where he has this condition, so we need them to expand their knowledge of it.

“It may be a disease that’s only one in a million, but there are many people out there who have this disease and are living with it.”

Have you or someone you know been affected by stiff person syndrome? Contact us at sian.elvin@metro.co.uk

Get in touch with our news team by emailing us at webnews@metro.co.uk.

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https://metro.co.uk/2023/01/09/man-with-stiff-person-syndrome-freezes-like-a-statue-with-no-notice-18063545/ Man with stiff person syndrome 'freezes like a statue' without notice

Justin Scacco

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