The understanding of stiff-person syndrome has increased since Celine Dion announced she was diagnosed, but advocates say more needs to be done to find a cure.
It's been more than three months since Canadian singer Celine Dion announced she was diagnosed with stiff-person syndrome .In the emotional video, Dion explains how the muscle spasms from SPSSince the announcement, Tara Zier, the founder of the Stiff Person Syndrome Research Foundation, said the public's understanding of the condition has increased, resulting in hope for people dealing with SPS that more research and funding will follow.
March 15 is International SPS Awareness Day and Zier says Dion's openness with her diagnosis has created more empathy toward an often invisible disease. "Anything that happens, like her announcement, that helps support our mission. We want to be able to leverage that any way we can, so that we can get to better treatments and a cure," she said.
Jabre, 36, started having issues with her digestive system in 2017, something she now knows is related to SPS. She was dismissed by doctors as having gastritis – inflammation of the stomach lining – and told to take antacid medications.After more doctor's appointments, Jabre was diagnosed with gastroparesis, a condition that slows the movement of the stomach's digestive system, which she says is related to the nervous system.
Doctors encouraged Jabre to exercise to decrease symptoms. By the end of 2020, she was running, doing high-intensity workouts, and felt like exercise was helping. The stiffness progressed to a point where Jabre was unable to give her husband a hug. Her spams became more frequent as her body became ridged with pain.
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