Local ‘Swiftie’ suffering from Stiff Person Syndrome on her way to see Taylor Swift
ROCHESTER, N.Y. A local woman who has an extremely rare disorder spoke to News10NBC about what and who is getting her through this difficult time.
Madeline Shanley has Stiff Person Syndrome, an extremely rare, one-in-a-million disorder that leaves her in constant pain.
But the one thing that helps her cope and brighten her day is Taylor Swift and her music.
“I mean Taylor’s music really got me through a lot of it,” Madeline said. “It gets me through a lot of it.”
Stiff Person Syndrome is extremely rare and caused Madeline to have to leave college in her first year. She explains it to people as a full-body Charley horse, but it’s much worse than anyone could imagine.
“It’s an autoimmune neuromuscular condition in which the muscles that are moving opposite each other contract at the same time and spasm against each other as hard as they physically can to the point where it can break bones, it can tear ligaments, it can tear tendons,” Madeline said.
But the one thing that has kept her fearless through the five years since her diagnosis is Taylor Swift.
“Whenever anything went wrong, whenever I was really struggling with something it seemed like she came out with a new song, a new Easter egg, a new music video, a new announcement for me to get excited about, for me to keep pushing for,” Madeline said.
And now, she is finally able to go see Taylor Swift in concert and have her life begin again.
“I made a bunch of friendship bracelets,” Madeline said. “I believe we have 180 so far. I’m so excited to give them out to fellow fans and trade friendship bracelets and just do something wholesome and fun with people.”
Madeline’s wearing a special dress to the show. It was custom-made to recreate Swift’s “Look What You Made Me Do” music video. The look also incorporates her wheelchair and also includes some donated broken jewelry and rhinestones from the Fairport community.
“Making it sparkle,” Madeline said. “Making my wheelchair sparkle. Making me sparkle. I’m just so excited and so grateful.”
This fits in line with her favorite song.
“The song ‘Bejeweled’ really hits with me,” Madeline said. “‘Best believe I’m still bejeweled when I walk in the room, I can still make the whole place shimmer.'”
This concert has been a long time coming for Madeline.
She told me she’s ready for it and knows all too well that she’s going to have the best day Saturday at the concert.