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Scared stiff: Emotional trauma may have triggered Md. woman's 'human statue' disease

stiff person syndrome.PNG

“In my dreams I’m well,” said Tara Zier, sitting on her couch in her Potomac home, feet up, heating pad on her shoulders, eyes closed as the Valium washes over her aching body. “And I wake up to my nightmare.”

The source of her nightmare: the worst of a disease, that seemed to appear out of the blue, called Stiff Person Syndrome (SPS). Videos of patients on-line show painful seizures, difficulty breathing, and life chained to a bed.

“That scared me to death,” Zier told 7 On Your Side.

A single mom of two children, a successful dentist, even a black belt in karate, she plunged herself into researching SPS, refusing to take her diagnosis lying down. She described her lowest physical point, about one year ago.

“I couldn’t get off the couch. I had to hire someone to live with me. I couldn’t drive. I had to stop working,” Zier said. “It’s robbed me of my life.”

Zier worked closely with her internist, Dr. Assil Saleh, to investigate what she could do to change her fate. Both of them agreed that her best hope would be to track down Dr. Scott Newsome, a top notch neurologist at Johns Hopkins Medicine, founder of the only center in the world for Stiff Person Syndrome.

“Why do some refer to this disease as the ‘human statue’ or ‘tin man’ disease?” 7 On Your Side asked Dr. Newsome in his lab at Hopkins.

“When people have full body spasms,” he explained, “they basically are like a brick wall, from top to bottom they freeze up. They can fall right over. They don’t have warning. It can come on like this.” Dr. Newsome snaps his fingers for emphasis.

Statistics show one in a million people will develop SPS, but because it is often misdiagnosed as Multiple Sclerosis (MS), and typically takes 7 years to identify, the number of people with the disease is likely higher. Dr. Newsome’s research team looks for a common molecular signature among patients to better target treatment.

SPS falls into the “invisible disease” category where a patient can look great on the outside. And Zier is a great example.

“From the outside observer, she’s fine,” said Dr. Newsome. “She’s not fine. She’s completely disabled from this disease.”

He understands invisible diseases better than most. Dr. Newsome was raised by a single mother with MS. She died of complications from the disease at age 59.

So what causes SPS? The answer is complex and somewhat mysterious. But Dr. Newsome believes emotional trauma can trigger this condition.

“Emotional stress actually can activate the immune system. So, if someone is predisposed to have an auto immune condition, if they are under big, bad stress over time, that may be enough to push toward whatever auto immune condition is going to be unmasked,” explained Dr. Newsome.

Zier knows big, bad stress. In 2014, she lost her former husband David to suicide. In the aftermath, her life unraveled, a vortex of attorneys, estate matters, and the highest concern, her two children. She genuinely worried that her son might not survive the loss of his father.

The children suffering, the complex bereavement that accompanies suicide, the creeping chronic physical pain, all scared her stiff. Literally petrified her. By 2017, she had full-blown Stiff Person Syndrome.

Since then, her journey to attempt to restore her heath has taken her to Hopkins and the Mayo Clinic, where Zier said the goal is not to “fix” what’s wrong, rather to take the pain, and enlarge and enrich the box of life around it. Zier also joined a support group on-line and found a documentary called Run to Live, based on another SPS patient who, remarkably, runs through his pain.

“It’s freedom like you would not believe,” said Shane James in the film.

Zier was inspired.

“I’m doing everything in my power to get better,” she said. “I’m running and crying at the same time.”

She feels tiny painful tears in her muscles, she risks bones breaking, but she has to.

“I just want to be a mom. I just want to take care of my kids. I don’t want to bedridden. I’m it. I’m all they have.”

Dr. Newsome said he has learned a lot from Zier about the power of resiliency. He believes she will be a pioneer for the rare disease, which does not attract grants for research because so few people are affected by it. But for the person who has the disease, it’s everything.

“Our goal at Hopkins is to study rare conditions so we can improve even one person’s life,” said Dr. Newsome. “I love Tara’s drive because she brings light to a rare condition.”

Although no patient with Stiff Person Syndrome has, Tara Zier is determined to be the first to reverse it.

To contribute to research to fight this rare disease, you can make a gift to Hopkins Medicine here.

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