Fairport woman talks about her experience with Stiff Person Syndrome in light of Celine Dion’s diagnosis

FAIRPORT, N.Y. – It’s difficult to watch, but Madeline Shanley wants you to see it.

The young Fairport woman let News10NBC record a spasm she was having during our interview. She has spasms because she has Stiff Person Syndrome, a rare neurological disorder that’s made news recently after singer Celine Dion announced she’s been diagnosed with it.

“I went from a fully functioning person to paralyzed and in excruciating pain and fully conscious,” Shanley said.

Most of the time, Shanley is bed-bound, but, she can move around inside her home on her wheelchair.

“My early 20’s, I don’t know what that’s like. I’ve missed it and I can’t get that back, but I can still work towards my dreams of being a business owner. I’m devoted to that.”

Shanley was studying business to be an entrepreneur. She sells hair accessories. SPS is so rare that for most of her diagnosis she was told what she was feeling wasn’t real.

“For a long time we didn’t know. For most of my illness, many of my providers insisted it was in my head,” Shanley said, upset.

Symptoms include stiffness in all parts of the body. The disease also creates sensitivity to light, noise, and touch. She wears headphones and sunglasses to help with that.

“To walk would be putting pressure on parts of my body that can’t handle it. It would create a spasm for me.”

We’ve all experienced the pain of a “charley horse” in our leg. For most of us, it doesn’t happen often and when it does it lasts a few seconds. But that pain is what Shanley feels in her whole body during a spasm, like she did during our interview.

After she got through it, you could tell this was not her first episode. She bounced right back to talking, and said this shortly after it happened:

“Anyone can have something like this suddenly happen and change your life,” Shanley said. “You should still treat that person with respect and care. We’re all human.”

Madeline is a “Swifty” or super fan of Taylor Swift. She says her music gets her through the pain. She says it will be difficult, but her dream is to one day go to one of her concerts.

She also says Celine Dion coming out with her diagnosis has helped her coping process.

Shanley’s medical expenses are significant. In order to keep her home and out of a nursing home, her family needs help. There’s a link to an online fundraiser here.