What it’s really like to have stiff person syndrome and ‘freeze like a statue’

Andrea and Ian Rawlins know what Celine Dion’s stiff person syndrome diagnosis means for her family.

A UK man who suffers from the same paralyzing neurological disorder regularly seizes up stock-still for 20 to 30 minutes due to the disease, as seen in alarming footage shared by his wife. She’d reportedly wanted to showcase the realities of the disease to dispel any false hopes of a miraculous recovery by the pop star.

“The more spasms he has, the harder it becomes,” Andrea, 54, told South West News Service while describing the condition that plagues her husband Ian. For 18 years, the 58-year-old motorbiking buff has suffered from stiff person syndrome, characterized by progressive muscle rigidity and repeated episodes of painful spasms, according to rarediseases.org.

“It’s called stiff person syndrome because basically, apart from the spasms, you become like a statue within your own body,” said Andrea of the disorder, which affects one in a million people worldwide.

Ian’s condition is so debilitating that the biker had to quit his gig due to the uncontrollable, body-stiffening seizures.

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“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,” the Barnsley, South Yorks, resident explained. “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.”

Disturbing footage shows the poor fellow seizing up with his hands and feet curled into claws for minutes at a time.

Andrea shared the freaky clips as a warning after Canadian pop icon Dion announced that she’d been diagnosed with SPS in a heart-rending post on social media in December.

“These spasms affect every aspect of my daily life,” wrote the “My Heart Will Go On” singer, who had to postpone her European tour because of the condition.

Elsewhere in the announcement, Dion insisted she was fighting hard despite the bleak outlook. “I have a great team of doctors working alongside me to help me get better and my precious children who are supporting me and giving me help,” she claimed. “I’m working hard with my sports medicine therapist every day to build back my strength and my ability to perform again but I have to admit it’s been a struggle.”

However, Andrea predicted that the pop star’s prognosis is likely a lot poorer than her post indicates, explaining, “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.”

The mother of two added, “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.”

The Brit based her prediction on watching her husband’s condition deteriorate drastically over nearly two decades. Ian’s troubles started in 2005 after he was plagued by pain and stiffness in his legs, after which he was mistakenly diagnosed with gluten ataxia, a form of celiac disease, SWNS reported.

Unfortunately, his symptoms snowballed to the point that he was forced to quit his gig as a professional motorbiker. Prior to his affliction, Ian participated in motorbike “trial events” around the world – even appearing on BBC One’s biking show “Kick Start,” in which riders use off-road rides to navigate obstacle courses within a set amount of time.

It wasn’t until three years later that doctors finally diagnosed him with SPS, by which point his affliction had progressed substantially.

Every time she tried to give her husband his daily drug regimen, Andrea paradoxically risked hurting her husband worse. “It can be very difficult to administer medication because also sometimes his jaw will lock and his teeth will be clamped together,” the heartbroken wife lamented. “You can’t touch a person who is having spasms because it exacerbates the symptoms. It can dislocate bones, tear muscles and rupture muscles.”

Ian’s condition hit a new low over the recent holidays after he experienced “a really bad attack on Christmas Day, a bad attack on Boxing Day, a bad attack the day after,” said Andrea.

The distraught gal was forced to call an ambulance to her home — which proved a gamble as paramedics had no idea how to treat him.

“When the team arrived, they’d never heard of stiff person syndrome,” Andrea rued. “They said they Googled it on the way, and I had to explain you can’t touch him.”

She added, “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.”

This ignorance was a microcosm of the medical system’s attitude toward SPS as a whole. Andrea explained that doctors are reluctant to bone up on their knowledge because the condition is so rare.

However, the hopeful wife believes that the time has come to pay proper attention to the disease, which as yet, has no cure. “We’re at the point where he’s got this condition so we need them to advance their knowledge about it,” Andrea declared. “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.”