When Ian Rawlins was first diagnosed with a “one in a million” medical condition, there was so little awareness of it that he and his wife could not even read an NHS leaflet about it.
Ian, from Barnsley, and his wife Andrea struggled to find out more information about Stiff Person Syndrome (SPS) when he was told he had the condition seven years ago.
The extremely rare syndrome’s most famous sufferer is singer Celine Dion. Patients like Ian are left “frozen like a statue”, unable to see, speak or move for hours at a time.
Andrea describes it as a “brutal and catastrophic progressive condition” which causes excruciating muscle spasms.
She has launched a petition asking the government to fund awareness of SPS because it is often misdiagnosed and medical staff do not know how to treat it.
Andrea, 58, says: “Ian has spasms every day and if it is a full body spasm, he will completely freeze.
“His body goes completely rigid so I have to try and move his special chair towards him, but I can’t touch him.
“When he goes into full body spasm, he can hear but he can’t see because it affects the eyes and he can’t speak because his jaw becomes locked and his legs will twist and turn.”
The spasms can last for anything between 30 minutes to several hours, and can be set off by touch, noise and temperature.
“When he is not in spasm, Ian can eat and speak but even watching TV can be too much of a visual stimulus and could trigger a spasm.”