Others suffering from Stiff Person Syndrome say Céline Dion\u0027s diagnosis may bring more awareness, funding for research and hope for a cure.
“I had heard she was struggling to find a diagnosis,” said Zier, who suffers from SPS herself and is the founder and CEO of the Maryland-based
“It’s a devastating disease,” which affects an estimated one in a million people, says Dr. Scott Newsome, an expert in SPS who established the Stiff Person Syndrome Center at Johns Hopkins Medicine in Baltimore. In its early stages, the disease can mimic a lot of other conditions, he said, so it takes about seven years from the onset of symptoms, on average, for people to get a diagnosis of SPS. Among the biggest risks with this disease is falling, because of the frequent spasms and the postural instability SPS sufferers develop.
Jabre was working in Beirut as the director of a non-profit organization for children with special needs when she started experiencing digestive system issues.
“When she told me, I looked at her and I cried and said: ‘Thank you for giving me a diagnosis.’ Little did I know … how horrible a diagnosis this was going to be but, at the time, I felt so much relief because for the first time I felt acknowledged by someone, I was completely crazy and making up everything.”Article content
Jabre can’t walk without a cane and, on bad days, she can’t walk at all. Her husband has to help her with showering and getting in and out of bed. She is extremely noise and light sensitive and is easily startled, all part of the disease. She has put off plans to have a baby until she finds a treatment that improves her quality of life.
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