Elmhurst mom shares her journey with rare SPS disorder Celine Dion has

Stiff Person Syndrome (SPS) is a rare neurological disorder that affects about one or two people per million.

It causes muscle stiffness, spasms, and pain, often interfering with daily activities and quality of life. Recently, the condition has gained more attention after singer Celine Dion revealed her diagnosis and postponed her tour dates.

One of the people who can relate to Dion’s struggle is Moira Papp, an Elmhurst wife and mom of three teens. Papp was diagnosed with SPS in 2021, after experiencing symptoms such as difficulty walking, slurred speech, and fatigue. She said she was shocked to learn that she had something in common with the global icon.

“I’m a fall risk. I’m on a walker 24/7,” Papp told NBC Chicago. “It takes me probably tripled the amount of time to do anything.”

Papp also said she was in awe of how Dion looked on stage at the Grammy Awards, but she also understood the challenges behind the scenes. “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.

According to experts, SPS is a chronic autoimmune condition that affects the communication between the brain and the muscles. It can be triggered by stress, noise, touch, or emotional distress. There is no cure for SPS, but treatments such as medication, physical therapy, and infusion can help manage the symptoms.

Papp said she is hopeful that Dion’s documentary, which will capture her daily life with SPS, will raise more awareness and understanding of the disease. She also said she is working with The Stiff Person Syndrome Research Foundation to create a patient registry and collect data for 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.