MANATEE COUNTY, Fla. — A nurse out of Manatee County who is used to treating the most vulnerable patients in hospitals is now in need of help herself because of a recent diagnosis.

What You Need To Know

  • Stiff-person syndrome is named after the symptoms that were originally described with the condition

  • People diagnosed with stiff-person syndrome suffer from episodes of muscles locking up and becoming stiff

  • According to Johns Hopkins Medicine, SPS was once known as stiff-man syndrome, but it is more common in women

  • There are treatments for SPS but there is currently no cure

After years of not knowing she was living with the rare autoimmune neurological disorder called stiff-person syndrome, she’s now at a crossroads and in need of help.

“We still don’t know exactly what causes the condition, but we do know it’s an autoimmune disease,” said Johns Hopkins neurologist Dr. Jonathan Krett. “Meaning the immune system is inappropriately attacking any of the body’s tissues and in this case it’s the central nervous system under attack and it causes inappropriate painful muscle spasms, tightness and stiffness, most commonly in the legs and the torso.”

Heather Cundy said she knew very little about the disease before being diagnosed with it herself.

Simple tasks like walking to the sink or cleaning her kitchen have become more of a task.

“I’m always in pain, but it’s just my norm. You just deal with it,” she said.

For years Cundy said she dealt with the pain by pushing through, but it only got worse.

“It’s hard to describe because they’re stiff and like my knees don’t want to bend and I have a very stiff walk. But at the same time, they feel like spaghetti legs like they’re just gonna collapse,” she said.

Cundy had to step down from and eventually resign from her dream job working as a pediatric nurse. That means no more insurance and the task of shelling out almost a thousand dollars a month for health care.

“I’ve always empathized greatly with my patients with my families and to be on the flip side has opened my eyes so much and how messed up our system is,” Cundy said.

It’s a system she’s hoping will change soon. Especially since there’s no cure for stiff-person syndrome and the treatments to manage it are more than she can afford.

Stiff-person syndrome most commonly develops in people ages 40 to 50 years old and affects one to two people in a million, according to Johns Hopkins Medicine.

Since Cundy is in that small percentage, those closest to her have started a fundraiser for her care and to raise awareness for others.

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