'My husband's one in a million medical condition doesn't even have a leaflet'

When Ian Rawlins was first diagnosed with a "one in a million" medical condition, there was so little awareness of it that he and his wife could not even read an NHS leaflet about it.

Ian, from Barnsley, and his wife Andrea struggled to find out more information about Stiff Person Syndrome (SPS) when he was told he had the condition seven years ago.

The extremely rare syndrome's most famous sufferer is singer Celine Dion. Patients like Ian are left "frozen like a statue", unable to see, speak or move for hours at a time.

Andrea describes it as a "brutal and catastrophic progressive condition" which causes excruciating muscle spasms.

She has launched a petition asking the government to fund awareness of SPS because it is often misdiagnosed and medical staff do not know how to treat it.

Andrea, 58, says: "Ian has spasms every day and if it is a full body spasm, he will completely freeze.

"His body goes completely rigid so I have to try and move his special chair towards him, but I can't touch him.

"When he goes into full body spasm, he can hear but he can't see because it affects the eyes and he can't speak because his jaw becomes locked and his legs will twist and turn."

The spasms can last for anything between 30 minutes to several hours, and can be set off by touch, noise and temperature.

"When he is not in spasm, Ian can eat and speak but even watching TV can be too much of a visual stimulus and could trigger a spasm."

Former HGV driver and mechanic Ian, 62, was diagnosed with SPS by chance after doctors struggled to recognise it.

"Originally we thought it was arthritis. Ian used to compete all over the world in motorcycle events so we also thought that could have affected his legs.

"Things got worse and we were speaking to a locum doctor who just announced out of the blue that his symptoms were because of Stiff Person Syndrome. We were shocked as we had never heard of it.

"It was a catastrophic diagnosis, it's a very brutal disease and is also a progressive condition."

The couple were then told that the hospital did not even product leaflets about SPS because it was so rarely seen, and were advised not to do online research about it as it could be "frightening".

SPS is often misdiagnosed as motor neurone disease, Parkinson's or lupus. Andrea wants medical staff to be given more training on how to deal with patients who are having a spasm.

"One of the greatest issues is when their lungs and throat go into spasm, so there's no way of giving oral medication.

"When we called an ambulance they had to call a second crew as the paramedics hadn't heard of it. The flashing lights and sirens of an ambulance can also escalate the spasms.

"If you touch a person with SPS, it can fracture the bones and tear the muscles. Paramedics and A&E departments are just not prepared at all to deal with it.

"You can't start explaining to a doctor how they must not touch them, they must not put a cuff on their arm or stick something on their finger."

Although the causes of SPS are not conclusively known, patients tend to have high glutamic acid decarboxylase (GAD) antibody levels in their blood.

About 80% of SPS patients have GAD antibodies, compared with about 1% of the general population.

In the UK, there were only 119 cases identified between 2000 and 2005, and it is most likely to develop in middle age.

The couple, who live in Wombwell and have two children, have been advised to buy a hot tub as heat can help, but Andrea is worried Ian could spasm while in it.

"Ian is a palliative care patient, he's housebound. We want the government to provide funds to improve awareness and increase access to specialist care."

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