EXCLUSIVE: Florida woman, 31, reveals how a car crash triggered her stiff person syndrome – the one-in-a-million condition that Celine Dion is fighting

A 31-year-old former criminal justice student from Florida has claimed a traumatic car accident may have caused her stiff-person syndrome – the life-wrecking disease suffered by megastar Celine Dion.

Jomana Houssari, an aspiring police officer, told DailyMail.com that she had suffered with health problems her “whole life” but that the crash may have triggered a crucial attack that left her disabled for life.

Ms Houssari developed the one-in-a-million condition in 2018, after 20 operations to repair damage caused by the accident.

Stiff Person Syndrome is a progressive and incurable neurological disorder in which the body attacks nerve cells, causing spasms and stiffness.

The same condition, which affects just 330 Americans and turns them into ‘human statues’, caused tragic singer Celine Dion to cancel her world tour last year.

Jomana Houssari, 31, was diagnosed with stiff person syndrome after a violent attack that left her unable to move her legs

Singer Celine Dion has also been diagnosed with Stiff Person Syndrome, forcing her to cancel her tour

Singer Celine Dion has also been diagnosed with Stiff Person Syndrome, forcing her to cancel her tour

“Suddenly I couldn’t move my legs,” Ms. Houssari said of the paralysis attack that ultimately led to her diagnosis. ‘A few minutes later I was able to function again, but I kept getting cramps in my legs.’

Ms. Houssari has suffered from health problems since birth. She was born weighing 2lbs 9oz and underwent hernia surgery as a newborn.

In her older years, she suffered from multiple autoimmune and neurological disorders.

Ms. Houssari was initially diagnosed with Guillain-Barre syndrome, an autoimmune disease in which the immune system attacks the nerves, eventually paralyzing the entire body.

However, she was not convinced by the diagnosis and began her own research. She found information about stiff person syndrome and asked her doctor, who had never experienced the condition before, to run some tests.

Ms Houssari has had medical problems since birth, but her SPS symptoms started after she underwent surgery to repair damage suffered in a serious car accident.  After the wreck, she underwent more than twenty operations

Ms Houssari has had medical problems since birth, but her SPS symptoms started after she underwent surgery to repair damage suffered in a serious car accident. After the wreck, she underwent more than twenty operations

There are two tests that can confirm stiff person syndrome.

The first looks for specific proteins in the blood that are known to be released in patients with the disease.

The second measures electrical activity in the nerves by inserting a needle directly into the affected muscles.

“It was a month-long wait for the results, but it was finally confirmed that I did indeed have SPS,” Ms Houssari said.

In ‘stiff person syndrome’, the immune system attacks a protein that helps make a chemical called GABA, which regulates motor neurons – the nerves that control movement.

Before her diagnosis, Ms. Houssari studied criminal justice and aspired to become a police officer

Before her diagnosis, Ms. Houssari studied criminal justice and aspired to become a police officer

Low levels of GABA cause the nerves to continually fire when they are not supposed to, resulting in spasms and stiffness.

The spasms can be so severe that people fall over or lead to problems walking and other disabilities. The condition also affects functions such as blood flow, meaning that in rare cases it can be fatal.

Ms. Houssari is just one of 330 Americans with stiff person syndrome.  When she was first diagnosed, her doctor had never experienced the condition

Ms. Houssari is just one of 330 Americans with stiff person syndrome. When she was first diagnosed, her doctor had never experienced the condition

“Getting the diagnosis was a relief, but thinking about the future is quite scary,” Ms Houssari said.

‘Right now my symptoms include muscle spasms all over my body. When these episodes occur, I become a human statue and feel stiffness in my chest, face, arms, legs and back.”

“In addition, I have been experiencing slurred speech, memory problems, random fits of laughter followed by fainting spells, general weakness, tingling in my head and body, and insomnia.”

Sometimes her spasms have led to broken bones.

These symptoms have forced her to abandon her studies and have robbed her of what most would consider a ‘normal’ life.

Managing her condition requires a rigorous routine of infusions every three weeks, twice-daily doses of baclofen to relieve muscle spasms, potassium pills, thyroid medication and essential vitamins.

Ms Houssari fears the day her condition will leave her in a wheelchair, but she says she is determined to make the most of the time she has left.

Mrs. Houssari.  diagnosed with Celine Dion's 'stiff person syndrome' says she's determined not to let the disease affect her performance

Ms Houssari fears the day her condition will leave her in a wheelchair, but she says she is determined to make the most of the time she has left.

“I face challenges in almost every aspect of my life,” she said, “but I am determined not to give up.”

‘Every little step forward gives me an incredible feeling of achievement. I have achieved things I never thought possible when I first became disabled.”

“I cherish every moment, whether I’m sitting by the pool, enjoying scary movies on Netflix, or taking a walk along the beach on the days I have the strength, collecting shells along the way.”

Doctors have told Ms Houssari that her condition will worsen, eventually leaving her in a wheelchair.

“I dread the day I end up in a wheelchair,” she said. “Until then, I am determined to make the most of the time I have left and raise awareness about SPS by sharing my story.”

STOP PERSON SYNDROME: UNTREATABLE NEUROLOGICAL PRESENCE THAT LOCKS THE BODY

Stiff Person Syndrome is an extremely rare condition in which the muscles in the trunk and limbs are alternately cramped and stiff.

Estimates suggest around 330 people in the US and 70 in Britain are affected. It remains little understood. About twice as many women as men are affected.

Due to the progressive disease, patients’ stiffness increases over time and may require them to use a wheelchair.

There are usually three types of syndrome:

  • Classic person-man syndrome: When there is stiffness and spasms around the back and abdomen, and sometimes also around the thighs and neck. It can cause back curvature over time.
  • Stiff Limb Syndrome: Spasms mainly affect the legs and feet, causing them to occasionally lock in place. Hands can also be affected.
  • Jerking stiff person syndrome: The rarest, most aggressive form, which includes symptoms of both others, and also affects the head and eyes.

Experts don’t know exactly what’s behind the disease.

But they believe it could be caused by an autoimmune reaction, in which the body attacks its own nerve cells that control muscle movement.

About 40 percent of patients also have type 1 diabetes, another autoimmune disease. Type 1 diabetes is mainly associated with the classic person syndrome.

Other autoimmune diseases such as vitiligo, which causes white patches on the skin, and pernicious anemia are also associated with it.

It is also more common in people with breast, lung, kidney, thyroid or colon cancer, as well as lymphoma, but researchers don’t yet know why.

In ‘stiff person syndrome’, the immune system attacks a protein that helps make gamma-aminobutyric acid (GABA), which regulates motor neurons – the nerves that control movement.

Low levels of GABA cause the neurons to fire continuously when they are not supposed to, resulting in spasms and stiffness.

What are the symptoms?

The main symptoms caused by ‘stiff person syndrome’ are spasms and stiffness of the trunk and limbs.

Spasms can be caused by loud noises, with the condition also causing increased sensitivity to sound.

Touch and emotional distress may also be felt more intensely as a result of the condition.

The spasms can be so severe that people fall over or lead to problems walking and other disabilities.

Stress and anxiety also tend to be higher in people with the condition, mainly due to the unpredictability of spasms.

The lack of GABA – which regulates anxiety – in their system also impacts mental health.