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Hoosier woman finds inspiration in the strength of singer Celine Dion

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Posted at 5:41 PM, Jan 05, 2023
and last updated 2023-01-05 20:39:02-05

INDIANAPOLIS — Jane Zabona-Lees has decided to turn to positivity as her power.

"If I can get through that really terrible time," Zabona-Lees said. "And ask for help and take the help from everybody from family to friends to doctors nurses, people on the street... if I can, you can."

Zabona-Lees was one of those women who could power through anything and was always on the go.

That is, until something started slowing her down, not long after her mother passed away.

Over the next few years, she noticed she would trip and fall often. She says she felt different.

"I couldn't hold my infant granddaughter up the stairs without holding on," Zabona-Lees said.

Zabona-Lees' bloodwork was fine at checkups, but still, she felt weaker.

She couldn't explain why, which frustrated her.

"It became about the struggle to get a diagnosis to get pain relief," Zabona-Lees said. "That was my mission with what little energy I had."

Zabona-Lees' son and two daughters went to work for her, seeking answers as they watched their mother's muscles waste away. She could not ever lift her arms above her head; she couldn't even lift her head. She was in pain, physically and emotionally. She says it hurts to even give or receive a hug.

She just wanted answers.

Finally, in 2019, doctors at IU Health pinpointed the condition affecting Zabona-Lees.

At this point, she weighed only 87 pounds and could not walk.

Zabona-Lees is battling a disorder commonly known as "Stiff Person Syndrome," a condition in which your immune system attacks your central nervous system.

Currently, there is no cure for the autoimmune disorder, but symptoms are treatable.     

Patients typically experience muscle stiffness and muscle spasms.

Those symptoms can be triggered by external factors, such as loud noises, physical touch or changes in temperature.

In the most extreme cases, people have difficulty walking and breathing.

IU Health Neurologist Dr. Robert Pascuzzi oversees Zabona-Lees' treatment. Dr. Pascuzzi says "Stiff Person Syndrome" affects roughly two out of every 1 million people, but more patients are receiving the diagnosis.

"It's a problem in the brain and spinal cord that leads to symptoms of back pain, stiffness and tightness in the back, spasms in the back, tightness and stiffness in the limbs, especially the legs," Pascuzi said.

Dr. Pascuzzi says the disease may be unusual, but it is diagnosable with a blood test. An antibody test confirms the condition and patients typically respond well to an number of available medications or other treatments.

For Zabona-Lees, that means regular IV therapy at Simon Cancer Center.

She says without this therapy, she would not be able to work.

As Zabona-Lees manages her condition, she has become focused on raising awareness about her illness, especially after singing sensation Celine Dion had the courage to share on social media she is also battling "Stiff Person Syndrome."

"That day I cried, off and on, pretty much all day for her," Zabona-Lees said.

Celine Dion's announcement resonated with her.

"I think all of us felt and relived that moment, because it was so raw," Zabona-Lees said. "And you can tell she's in emotional pain, but also physical pain. And the way she looked affected me for sure. We fight like hell and she will too."

Today, Zabona-Lees is up to 125 pounds and is building muscle again.

She says this painful journey comes with blessings; it has strengthened her relationships with her three children, two grandkids and friends.

"My time with them is precious and has been precious," she says, "and without them, I probably wouldn't be here probably."