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Moira Papp, Elmhurst’s wife and mother of three teenagers, says she has something in common with world icon Celine Dion. Both suffer from stiff person syndrome, or SPS, a rare chronic autoimmune neurological disorder.
For Papp, SPS affects the way he moves.
“I am at risk of falling. “I’m on a walker 24/7,” Papp said. “It probably takes me three times as long to do anything.”
Papp also suffers from slurred speech, another side effect of the disorder. What hasn’t been affected is Papp’s sense of humor.
“Pronunciation is a new gift. I’ll call it a gift, but it happens. It’s neurological,” Papp said.
Papp was one of many people who were stunned on February 4, 2024, when Celine Dion appeared on stage to present one of the Grammy Awards.
“It was a big secret. But I know why. Because maybe he had a bad day and had to cancel,” Papp said.
Papp said she was amazed by how Dion looked on stage, but says some in the SPS community were also concerned that Dion’s appearance didn’t convey the severity of the illness.
“Right now, look at me. I mean, I’m happy. I’m outside the house. People probably say, “It looks good.” But because of how much effort it takes to shower, I have a hard time falling asleep at night,” Papp said.
Coinciding with the appearance of the Grammys came news that a documentary capturing Celine Dion’s daily life with SPS will be released in the future.
“By having that documentary feel, people will just know and learn about this disease,” said Dr. Amanda Piquet, director of the Autoimmune Neurology Program at the University of Colorado.
Called “Stiff Man Syndrome” when it was first described by doctors in 1956, it was renamed after doctors recognized that it affects more women than men.
Some estimates say that SPS affects one in a million people, but the exact number is unclear, as SPS is difficult to diagnose.
We need, as a field, to better define the disease, to diagnose it better. And with the recognition that this disease is now having, that will help and advance the field with clinical trials,” Piquet said.
Since his diagnosis in 2021, Papp has worked with the Stiff Person Syndrome Research Foundation to help create a patient registry to help turn data into research.
“The world of rare diseases is fascinating. So I’m learning. It’s not like I’m sitting around waiting for someone to do it. There’s no one who can do it, so I’m going to do it,” Papp said.
Physical therapy and the weekly infusion have helped control Papp’s muscle spasms. Ready to celebrate your 56thth birthday in March, remains optimistic.
“There may be a cure for this if we put the right information in the right hands,” Papp said.
Papp created an organization called “Moira’s Mission” to raise awareness. The group will host an inaugural fundraiser in Elmhurst on March 3, 2024.
The “A Fight to Find a Cure for SPS” benefit and fundraiser will be held from 12 to 5 pm at Stage 119, located at 119 Commerce Avenue in Elmhurst.
For more information, click here.
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