Dion's sister Claudette said Celine is 'listening to the top researchers in the field' of stiff person syndrome, but has yet to find a treatment that works.
Affecting one in a million people, the condition is not very well understood, but is characterized by fluctuating muscle rigidity in the trunk and limbs and a heightened sensitivity to stimuli such as noise, touch and emotional distress, which can set off muscle spasms, according to the National Institute for Neurological Disorders. People can be too scared to leave the house because of noise sensitivity, have frequent falls or abnormal posture.
“I’d take my son Chris into the playground and start holding his hand. I’d be OK to get to the classroom, but coming back out, it just seemed as if the playground was about 1,000 times bigger than it really was. I’d have to find someone I knew — one of the mums or dads — and walk with them. It is such a cruel condition.”The doctor sent her to a neurologist.
Treatment is still varied and aimed at slowing down the progression of the condition rather than curing it, with those with SPS learning to live with the symptoms, which vary greatly from person to person. Drugs only go so far.
What is her quality of life like 25 years after first being diagnosed with SPS? “I wouldn’t say it’s good, but you have to carry on. My husband has five slipped discs, so between us, I like to say that if something is on the floor, I can pick it up whereas he can’t; but if it’s high up, I can’t reach it, so he has to do it.”
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