A mom from DC shared her hellish ordeal battling a one-in-a-million condition that turns her into a human statue.
Tara Zir, 53, is working to raise awareness about “stiff person syndrome” so that others don’t need to live in limbo for years like she did.
She began experiencing bouts of excruciating back pain, difficulty walking, and fatigue in 2015 after the death of her ex-husband.
For three years, Ms. Zeer was misdiagnosed by a group of specialists who were unable to pinpoint the exact cause of her debilitating symptoms.
Tara Zir sought answers about worsening back and neck pain for three years before she received a diagnosis of stiff person syndrome.
Mrs. Zere’s convulsions became so severe and debilitating that she was soon unable to walk her dog or work in her dental practice. Experts suggest that stress, such as the sudden loss of a partner, can amplify 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 star 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 is an autoimmune disorder in which the body’s immune system attacks and kills healthy cells.
Diagnosing the problem can be very difficult and the severity of symptoms varies from person to person.
the The most common symptoms It is a muscle stiffness in the trunk and extremities, along with bouts of violent muscle spasms. These spasms can be so severe that they can cause bones to crack and break.
They can be triggered by stress or external stimuli, such as a knock on a door or loud yelling, as well as physical touch and changes in temperature.
Muscle spasms and rigidity can turn people into “human statues”, which can be toppled like a trail of dominoes.
The spasms can be so severe that they cause people to fall or lead to difficulty walking and, over time, an even greater disability. It is often misdiagnosed as Parkinson’s disease, multiple sclerosis, and fibromyalgia.
The main risk factor for SPS, which affects one or two in a million people, is being a woman.
Women are more likely to have this disorder. It sometimes goes hand in hand with autoimmune disorders like vitiligo and type 1 diabetes.
In the case of Mrs. Zare, the condition caused debilitating back and neck pain that stripped her of the ability to work in her dental practice and engage in the activities she loves including karate.
She also had frequent panic attacks, which led to her entering the emergency department more than once.
The stress of losing her ex-husband and the father of her children is likely to exacerbate SPS symptoms, which can be exacerbated by stress.
Mrs. Minister Tell On the inside it was running at about five percent. She had to renovate her home so she could live exclusively on the first floor, after losing the ability to walk up stairs. She had to hire a caregiver to help her as well as her children and lost the ability to drive and walk the dog.
She said in 2019: ‘I felt a deep pain in my spine… I took a step back from kickboxing and martial arts, but I was still short of breath and didn’t feel good. ”
She tried for years to find a successful treatment for her undiagnosed condition. She sought insight from an endocrinologist, psychiatrist, rheumatologist, general cardiologist, and electrocardiologist. However, her symptoms persisted and daily life was disrupted.
People with SPS are more likely to experience 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.
Medications 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 man syndrome is characterized by stiffness and spasms around the back, stomach, and sometimes the thighs and neck. It can cause a curvature of the back over time.
Stiff limb syndrome causes special spasms that affect the legs and feet, sometimes holding them in place. Hands can also be affected.
Stiff jerking is the rarer and more aggressive form, which includes symptoms from others, and also affects the head and eyes.
Ms. Zare has been around since she was diagnosed with SPS after a series of tests Tough Person Syndrome Research Foundation to bring patients together Fundraising for treatment.
She said she is now functioning at 60 percent, which is much better than before getting answers about her condition. She can drive and walk her dog again, but she can no longer practice as a dentist.
She said that even standing up to take a shower is painful.
Mrs. Zeer is doing better now. Despite the condition’s rarity, she is not alone in her frustrated search for answers. A former real estate agent named Jay Kahn Finally he was diagnosed By physicians at the renowned Johns Hopkins University Hospital System in Baltimore, Maryland.
Jay began experiencing a range of pain and weakness in her legs, along with muscle stiffness that she described as excruciating in 2004. By 2015, she needed crutches, and was on the verge of becoming wheelchair-bound.
Symptoms of the condition can come on gradually as they have with homosexuals, and most often appear between the ages of 30 and 60.