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.<br /><br />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. <br /><br />The incurable neurological disorder causes sufferers to both convulse and freeze "like a statue”.<br /><br />It made headlines in December 2022 when Celine Dion announced her diagnosis on Instagram. <br /><br />The ‘Power of Love’ singer has since become an unofficial spokesperson for the debilitating condition. <br /><br />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.<br /><br />“It is a big pressure on her,” Andrea said. “It is going to take its toll on her. <br /><br />“It’s progressive, it’s incurable and the pain is untouchable, it is unstoppable.”<br /><br />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.<br /><br />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 <br /><br />“She's a performer, but she’s also a human being. It is excruciatingly, brutally painful.<br /><br />“With her fans, and her children, will she tell how really challenging, heartbreaking and devastating it is?”<br /><br />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.”<br /><br />Andrea, who is from Barnsley, South Yorkshire, called on others to shoulder some of the burden to raise awareness. <br /><br />“Everybody looks to Celine, but there needs to be more awareness in general,” she said.<br /><br />Before his illness, Ian competed in motorbike “trial events” around the world – and appeared on BBC One biking show Kick Start.<br /><br />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.<br /><br />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.<br /><br />Ian’s condition has deteriorated so much that the slightest noise or motion can now trigger a spasm which could last hours. <br /><br />“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.”<br /><br />Andrea said she apologises constantly for actions which could trigger Ian and is forced to brief people before they visit their home <br /><br />“We still live like people did during the pandemic. The outside world is a difficult place to reach at times.”<br /><br />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. <br /><br />She said: “Calling for an ambulance or going to A&E is hazardous for SPS because people don’t understand the dangers.
