An Elmhurst wife and mom of three teens, Moira Papp can says she has something in common with global icon Celine Dion. They both suffer from Stiff Person Syndrome or SPS, a rare chronic autoimmune neurological disorder.
For Papp, SPS impacts how she moves.
“I'm a fall risk. I'm on a walker 24/7,” Papp said. “It takes me probably tripled the amount of time to do anything.”
Papp also suffers from slurred speech, another side effect of the disorder. What hasn’t been impacted is Papp’s sense of humor.
“The slurring is a new gift. I'm gonna call it a gift, but it happens. It’s neurological,” said Papp.
Papp was one of many people stunned on Feb. 4, 2024, when Celine Dion appeared on stage to present one of the Grammy Awards.
“It was a big secret. But I kind of know why. Because she might have had a bad day and had to cancel,” Papp said.
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Papp said she was in awe of how Dion looked on stage, but she says some in the SPS community were also concerned Dion’s appearance did not convey the seriousness of the disease.
“Right now, look at me. I mean, I'm happy. I'm out and about. People probably say, ‘She looks fine.’ But the amount of effort it takes me to shower, it takes me to get to sleep at night,” Papp said.
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Coinciding with the Grammys appearance came the news that an upcoming documentary capturing Celine Dion’s daily life with SPS will be released in the future.
“Having that documentary air, people are just going to know and learn this disease,” said Dr. Amanda Piquet, Autoimmune Neurology Program Director at the University of Colorado.
Called “Stiff-man Syndrome” when it was first described by doctors in 1956, it was renamed after doctors recognized if affects more women than men.
Some estimates say SPS impacts one in a million people, but the exact number is unclear, as SPS is difficult to diagnose.
We need to, as a field, define the disease better, diagnose this disease better. And with the recognition now that this disease is getting, that will help and that will move the field forward with clinical trials,” Piquet said.
Since her 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 rare disease world is fascinating. So I'm learning. It's not like I'm sitting back just waiting for someone to do it. There isn't anyone to do it, so I'll do it,” Papp said.
Physical therapy and weekly infusion have helped tamper Papp’s muscle spasms. Set to celebrate her 56th birthday in March, she remains optimistic.
“There can be a cure for this if we get the right information in the right hands,” Papp said.
Papp created an organization called “Moira’s Mission” to raise awareness. The group is hosting an inaugural fundraiser in Elmhurst on March 3, 2024.
“A Fight to Find a Cure for SPS” benefit and fundraiser will be held from 12 to 5 p.m. at Stage 119, located at 119 Commerce Avenue in Elmhurst.
For more information, click here.
