A DC mom has shared her hellish ordeal battling a one-in-a-million affliction that turns her into a human statue.
Tara Zier, 53, is raising awareness of “stiff person syndrome” so others don’t have to live in limbo for years like her.
After the death of her ex-husband in 2015, she suffered from excruciating back pain, difficulty walking and fatigue.
For three years, Ms. Zier was misdiagnosed by a series of specialists who couldn’t pinpoint the exact cause of her debilitating symptoms.
Tara Zier spent three years searching for answers about her worsening back and neck pain before being diagnosed with ‘stiff person syndrome’
Mrs. Zier’s spasms became severe and debilitating, so that she was soon unable to walk her dog or work in her dental office. Experts suggest that stress, such as the sudden loss of a partner, can exacerbate symptoms
Finally, in 2017, a neurologist ordered a barrage of blood tests that confirmed she had stiff person syndrome (SPS), which affects fewer than 5,000 Americans.
The rare condition made headlines last year when Canadian superstar Celine Dion revealed in an emotional post to fans that her SPS diagnosis and painful symptoms had led her to cancel upcoming tour dates.
The exact cause of the neurological condition has eluded researchers, but they suspect it to be an autoimmune disease in which the body’s own immune system attacks and kills healthy cells.
Diagnosing the problem can be extremely difficult, and the severity of symptoms varies by person.
The most common symptoms are muscle stiffening in the trunk and extremities, along with episodes of violent muscle spasms. Those spasms can be so intense that bones can shatter and break.
They can be triggered by stress or external stimuli, such as a knock on the door or a loud scream, as well as physical touch and temperature changes.
The muscle spasms and stiffness can turn people into ‘human statues’, which can be knocked over like a trail of dominoes.
The spasms can be so severe that people fall over or have difficulty walking and become even more disabled over time. It is often misdiagnosed as Parkinson’s disease, multiple sclerosis, and fibromyalgia.
A major risk factor for stiff person syndrome, which affects one or two in a million people, is being female.
Women are twice as likely to experience the condition. It sometimes goes hand in hand with autoimmune diseases such as vitiligo and type 1 diabetes.
In Ms. Zier’s case, the condition caused debilitating back and neck pain that prevented her from working in her dental office and doing activities she loves, including karate.
She also had frequent panic attacks, which landed her in the emergency department more than once.
The stress of losing her ex-husband and the father of her children likely exacerbated her SPS symptoms, which can be exacerbated by stress.
Mrs Zier told Insider that she was working at about five percent. She had to renovate her house so that she could only live on the first floor because she could no longer climb the stairs. She had to hire a caregiver to help both her and her children and lost her ability to drive and walk the dog.
She said in 2019, “It felt like a deep backache…I quit kickboxing and martial arts, but I was still short of breath and just didn’t feel great.”
She spent years trying to find a treatment that worked for her condition, which doctors still hadn’t diagnosed. She sought the insight of an endocrinologist, psychiatrist, rheumatologist, general cardiologist, and electrophysiology cardiologist. Still, her symptoms persisted, disrupting daily life.
People with SPS are more likely to have anxiety and depression. Scientists believe this is because patients have lower levels of the neurotransmitter GABA, which regulates anxiety.
Many people with SPS make antibodies against an enzyme called glutamic acid decarboxylase (GAD), which plays a role in making GABA.
Drugs that enhance GABA neurotransmission, such as diazepam, vigabatrin, and baclofen, provide some relief from clinical symptoms, but there is no cure for SPS.
There are three types of the syndrome.
Classic person-man syndrome is characterized by stiffness and spasms around the back and abdomen, and sometimes thighs and neck. It can cause curvature of the back over time.
Stiff limb syndrome causes spasms that mainly affect the legs and feet, occasionally causing them to get stuck in place. Hands can also be affected.
And shocking stiff person syndrome is the rarest, most aggressive form, which includes symptoms from both others, as well as affecting the head and eyes.
Since she was diagnosed with SPS after a series of tests, Ms. Zier has set up the Stiff Person Syndrom Research Foundation to bring patients together and raise money for a cure.
She said she’s now at 60 percent, significantly better than before she got answers about her condition. She can drive and walk her dog again, but can no longer practice as a dentist.
Even standing for a shower is painful, she said.
Mrs Zier is doing better now. Despite the rarity of the condition, she is not alone in her frustrating search for answers. A former realtor named Gay was eventually diagnosed with the condition by physicians at the renowned Johns Hopkins University hospital system in Baltimore, Maryland.
Gay began experiencing a combination of pain and weakness in her legs, along with muscle stiffness that she described as unbearable in 2004. In 2015, she needed crutches and was on the verge of becoming wheelchair bound.
Symptoms of the condition can develop gradually, as with Gay, and often appear between ages 30 and 60.