What it’s like to live — and even thrive — with Stiff Person Syndrome

You probably hadn’t heard the name Stiff Person Syndrome until Superstar singer Celine Dion announced her battle with the rare and often misdiagnosed ailment.

Now, a local woman walks us through what it’s like to live – even thrive — with the debilitating syndrome.

In a December 2022 message to her fans, Dion gave voice to the one-in-one-million people struggling with the same disorder she’s been battling offstage.

“My mind was, ‘Oh my goodness, I feel so bad for her,’” Moira Papp said. “But I was very happy because I knew she has a humongous voice and this is going to get recognized.” 

Papp, 54, was diagnosed in 2021.

She was always active but says, “I did notice I was falling, but I contributed it to tripping or going too fast. I was falling up and down the stairs.”

Multiple Sclerosis was suggested – then cervical spine stenosis. But surgery didn’t help her gait.

Dr. David Randall is a neurologist at Advocate Health Care.

“There’s no single absolute characteristic that separates it from other diseases, so people look for things like: Did they have a stroke? Have they had damage to their spinal cord? Do they have Parkinson’s disease?” he said. “So there’s other neurologic diseases that may share some of the difficulties with walking and the feeling of stiffness.”

“Everyone’s like, ‘What do you have?’” Papp said. “And then it takes forever to talk about it because you have to talk about how rare it is.”

Most patients often go years without a proper diagnosis.

“I’ve had MRIs, CTs, PET scans, I mean all of it numerous times,” Papp said.

Signs of SPS don’t necessarily show up on imaging, but there are biomarkers that help doctors make the call. Papp has an elevated protein – called GAD-65 — in her blood.

“It’s an autoimmune disease as best we know and it recognizes a protein that we need as being foreign,” Randall said. “And it attacks that protein and that stops the control of the muscle tightness.”

Papp treatment regimen includes weekly infusions of immunoglobulin – a drug that targets her overactive immune system.

“Somebody can be just walking along and they get terrible muscle stiffness and they drop to the ground,” Randall said. “And so there are injuries associated with that as well.”

“I’ve learned that a stiff person has to move,” Papp said. “You cannot sit around and lay around in bed. Even if you don’t feel like moving you have to move. So I have a whole new friend group at the health club because I’m there every day.”

To learn more about stiff person syndrome, visit stiffperson.org

Even muscles involved in breathing, swallowing and speech can be affected. According to Dion, muscle spasms have impacted her mobility and her vocal cords.

While Papp never sang before her diagnosis she has now taken it up on a whim and recently performed on stage for the first time.

“Maybe there’s something in me that says you know what? You gotta live life to the fullest!” she said.

Stiff Person Syndrome typically progresses over 10 to 20 years. But doctors say they’re happy they have treatments to offer patients with the degenerative disease.