The wife of a former HGV driver with stiff person syndrome has voiced concern for Celine Dion - amid pressure on the singer to be figurehead for the disease.
Andrea Rawlins, 56, has cared for her once bike-mad husband Ian, 60, for nearly 20 years, tending to his needs and protecting him during daily spasms.
The incurable neurological disorder causes sufferers to both convulse and freeze "like a statue”.
It made headlines in December 2022 when Celine Dion announced her diagnosis on Instagram.
The ‘Power of Love’ singer has since become an unofficial spokesperson for the debilitating condition.
She will delve further into her experience for the Amazon Prime documentary I Am: Celine Dion, which is set to be released on 25 June.
“It is a big pressure on her,” Andrea said. “It is going to take its toll on her.
“It’s progressive, it’s incurable and the pain is untouchable, it is unstoppable.”
Though she is grateful for all Celine is doing to raise awareness of the life-altering disease, Andrea could not help feeling anxious for the singer’s health.
The mum-of-two said: “She has a voice that will be listened to and she is now seen as a figure head for the disease
“She's a performer, but she’s also a human being. It is excruciatingly, brutally painful.
“With her fans, and her children, will she tell how really challenging, heartbreaking and devastating it is?”
She added: “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.”
Andrea, who is from Barnsley, South Yorkshire, called on others to shoulder some of the burden to raise awareness.
“Everybody looks to Celine, but there needs to be more awareness in general,” she 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 was diagnosed with gluten ataxia, a form of coeliac disease.
When his symptoms worsened, he gave up work, and it wasn’t until around four years ago that doctors finally realised that he had stiff person syndrome.
Ian’s condition has deteriorated so much that the slightest noise or motion can now trigger a spasm which could last hours.
“The phone can ring and that can trigger, or someone knocks on the door," Andrea said, adding: “I get hiccups or sneeze and he can spasm.”
Andrea said she apologises constantly for actions which could trigger Ian and is forced to brief people before they visit their home
“We still live like people did during the pandemic. The outside world is a difficult place to reach at times.”
At times when urgent medical help is needed, Andrea said paramedics and doctors could not always be relied upon because of a lack of understanding of the disease.
She said: “Calling for an ambulance or going to A&E is hazardous for SPS because people don’t understand the dangers.
