The wife of a lorry driver diagnosed with the same "one-in-million" disease as Celine Dion fears people may not realise the extent of his devastating prognosis.
Ian Rawlins, 58, has suffered from Stiff Person Syndrome for roughly 18 years, leaving him writhing in pain from his daily spasms.
The condition, for which there is no cure, is a rare neurological disorder where sufferers can both experience convulsions and become "like a statue" within their own bodies.
Former cyclist Ian from Barnsley, South Yorkshire, now needs to take regular medication to help control his agonizing seizures, which can last for hours at a time.
Ian's 54-year-old wife, Andrea, said his 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.
She said: "He had a really bad attack on Christmas day, a bad attack on boxing day, a bad attack the day after. 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.
"When the team arrived, they'd never heard of stiff person syndrome. They said they Googled it on the way, and 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."
After seeing Ian's heartbreaking struggle with the disease, Andrea said fans of 'The Power of Love' singer also needed to recognise she won't "get better overnight".
She said: "People at first won't accept how much her symptoms will escalate. 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: "It's called stiff person syndrome because basically, apart from the spasms, you become like a statue within your own body."
Andrea said before his illness, Ian competed in motorbike "trial events" around the world - and appeared on BBC One biking show 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.
Andrea 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 20-30 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."
Andrea said the lack of knowledge surrounding Stiff Person Syndrome was understandable, but she pleaded with medics to quiz up on the condition in the future.
She said: "There is a reluctance by some GPs and doctors, which we've spoken to in the past.
"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."
