Ian Rawlins, 58 and pictured here with wife Andrea, has had the condition for around 18 years (Picture: SWNS)
The wife of a lorry driver has revealed the reality of what living with the ‘one-in-a-million’ disease Stiff Person Syndrome is really like.
The rare condition has been brought to public attention since singer Celine Dion was forced to postpone her upcoming tour dates after being diagnosed with the syndrome.
Known as SPS, it is 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 spasms due to the condition, which he has had for around 18 years.
‘It’s called Stiff Person Syndrome because basically, apart from the spasms, you become like a statue within your own body,’ the 54-year-old from Barnsley, South Yorkshire, said.
‘When he’s been moving around the house and he suddenly sees me out of the corner of his eye, it can go two ways.
‘He either completely freezes like a statue and can’t move for 20 to 30 minutes, or he goes immediately into a spasm that can go on for hours and hours.
‘It can be very difficult to administer medication because also sometimes his jaw will lock and his teeth will be clamped together.’
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He was only diagnosed with the condition three years ago, despite suffering with it for much longer (Picture: SWNS)
Before his illness Ian was incredibly into motorbikes and competed in trials around the world – even appearing on BBC One programme Kick Start.
But around 2005, he felt a lot of pain and stiffness in his legs, and he was then diagnosed with gluten ataxia, a form of coeliac disease.
Sadly, his symptoms worsened, which forced him to give up work, and it wasn’t until about three years ago that doctors finally realized that he had Stiff Person Syndrome.
Now Ian’s condition has deteriorated so much that he experiences a full range of upsetting traits associated with the rare condition every day.
The mum-of-two said Ian’s health became so poor over the Christmas period that she was forced to call for an ambulance to come to her home.
But she explained that due to the scarce nature of the condition, affecting only one or two in every million, the paramedics who arrived were not sure how to treat him.
Andrea wishes to raise more awareness of Stiff Person Syndrome (Picture: 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 may include stiff muscles in the torso, arms, and legs, and greater sensitivity to noise, touch, and emotional distress, which can set off muscle spasms. Many people fall frequently with the condition and could develop abnormal, hunched-over postures.
Scientists don’t yet understand what causes SPS, but research suggests it is the result of an autoimmune response gone awry 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 drugs which prevent muscle spasms.
‘He had a really bad attack on Christmas Day, a bad attack on Boxing Day, a bad attack the day after,’ she said. ‘The more spasms he has, the harder it becomes.
‘It’s very difficult because you can’t touch a person who is having spasms because it exacerbates the symptoms. It can dislocate bones, tear muscles and rupture muscles.’
She said paramedics had to Google the condition because they had ‘never heard of it’.
Andrea added: ‘I had to explain you can’t touch him. They called a second ambulance team out and again, they’d never heard of it.
‘So there was a great deal of phone calls back and forth between them and the contact centre.’
She warned fans of Celine Dion that they need to realise she won’t ‘get better overnight’.
Celine Dion was forced to postpone her upcoming tour dates after being diagnosed with Stiff Person Syndrome (Picture: AFP via Getty Images)
‘People at first won’t accept how much her symptoms will escalate,’ Andrea said. ‘At the moment, people believe that she’s sort of going to start singing again.
‘Depending on the severity of the symptoms, I think she will get worse with time – unless she has a stem cell transplant – which she may have access to.
‘I’m not sure of how fast it will escalate with her, but as it does escalate, people will become more and more aware that she doesn’t suddenly get better overnight.’
She added she was pleased some progress is starting to be made around awareness of Stiff Person Syndrome.
‘There is a reluctance by some GPs and doctors, which 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 condition.”
‘But we’re at the point where he’s got this condition so we need them to advance their knowledge about it.
‘It may be a one-in-a-million disease but there are lots of people out there that have this condition and are living with it.’
Have you, or has someone you know, been affected by Stiff Person Syndrome? Get in touch at [email protected]
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Ian Rawlins, 58, has had the condition for around 18 years.
