Health & Lifestyle

I’ve got the same one-in-a-million ‘stiff person syndrome’ that Celine Dion is fighting – it can turn me into a ‘human statue’ at any moment

A 31-year-old woman has shared how she suffers the same ‘stiff person syndrome’ that Celine Dion is fighting.

Jomana Houssari, from Florida, developed the rare disorder in 2018, which triggers stiffness and spasms all over her body, turning her into a ‘human statue’.

The aspiring police officer said she will eventually be confined to a wheelchair but is determined to ‘make the most of the time’ she has left and raise awareness about her condition. 

Celine was forced to pause her world tour and step back from her singing career in December 2022 after revealing she was suffering from the same incurable condition, thought to affect one in a million people.

She made a shock appearance yesterday at the 2024 Grammys, walking onstage with the support of eldest son Rene-Charles Angelil, 23, to cheers and a standing ovation and presented Album of the Year to Taylor Swift, who then came under fire on social media for supposedly ‘blanking’ Celine.

Jomana Houssari, from Florida, developed the rare disorder in 2018, which triggers stiffness and spasms all over her body, turning her into a 'human statue'

Jomana Houssari, from Florida, developed the rare disorder in 2018, which triggers stiffness and spasms all over her body, turning her into a ‘human statue’ 

Celine made a shock appearance yesterday at the 2024 Grammys (pictured), walking onstage with the support of eldest son Rene-Charles Angelil, 23, to cheers and a standing ovation and presented Album of the Year to Taylor Swift, who then came under fire on social media for supposedly 'blanking' Celine

Celine made a shock appearance yesterday at the 2024 Grammys (pictured), walking onstage with the support of eldest son Rene-Charles Angelil, 23, to cheers and a standing ovation and presented Album of the Year to Taylor Swift, who then came under fire on social media for supposedly ‘blanking’ Celine

Stiff person syndrome is a progressive and incurable neurological condition in which the body attacks nerve cells, causing spasms and rigidity.

Early signs of the condition include painful muscle contractions in the legs and back. Spasms can also affect the abdomen, arms and face.

This can lead to a stiff posture, difficulties walking and falls. More women are affected than men and symptoms most commonly develop in people aged 40 to 50.

It is unclear what causes stiff person syndrome but it is believed to be an autoimmune disorder – when the body’s immune system attacks healthy tissues.

Most people with the condition have unique antibodies in their blood that interfere with neurotransmitters in the brain, which causes spasms and contractions.

Ms Houssari told DailyMail.com that she was diagnosed with stiff person syndrome following 20 operations to repair damage caused by a car accident. It is unclear whether the surgeries are related to her diagnosis.

She already suffered from multiple autoimmune and neurological conditions, including Guillain-Barre syndrome, which causes the immune system to attack the nerves, eventually paralysing the entire body.

Ms Houssari has had medical issues since birth, but her SPS symptoms started after undergoing surgery to repair damage sustained in a major car accident. After the wreck, she had more than 20 surgeries

Ms Houssari has had medical issues since birth, but her SPS symptoms started after undergoing surgery to repair damage sustained in a major car accident. After the wreck, she had more than 20 surgeries

Before her diagnosis, Ms Houssari was studying criminal justice and aspiring to be a police officer

Before her diagnosis, Ms Houssari was studying criminal justice and aspiring to be a police officer

Ms Houssari asked her doctors to test her for stiff person syndrome after suffering from spasms.

While the condition is difficult to diagnose, blood tests, scans and a lumbar puncture, which involves taking a sample of cerebrospinal fluid from the spin, can rule out other conditions and spot signs of the disorder.

‘It was a month-long wait for the results, but eventually, it was confirmed that I indeed had stiff person syndrome,’ Ms Houssari said.

‘Getting the diagnosis was a relief, but thinking about the future is pretty scary,’ Ms Houssari said.

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

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

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

Ms Houssari dreads the day her condition will put her in a wheelchair, but she said she is determined to make the most of the time she has left

Ms Houssari. who has been diagnosed with Celine Dion's illness, stiff person syndrome, says she's determined not to let the illness affect her accomplishments

Ms Houssari dreads the day her condition will put her in a wheelchair, but she said she is determined to make the most of the time she has left

‘On top of that, I deal with slurred speech, memory problems, random bouts of laughter followed by fainting, overall weakness, tingling sensations in my head and body, and insomnia.’

At times, her spasms have led to broken bones.

The symptoms have forced her to put her criminal justice studies on hold 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 (a muscle relaxant) to alleviate spasms. She also takes potassium pills and thyroid medication.

‘I face challenges with almost every aspect of my life but I’m determined not to give up,’ she said.

‘Every small step forward fills me with an incredible sense of achievement. I’ve accomplished things I never thought possible when I first became disabled.

‘I cherish every moment, whether sitting by the pool, enjoying scary movies on Netflix, or taking a walk along the beach on those days when I have the strength, collecting shells as I go.’

Ms Houssari said she has been told by doctors that her condition will worsen, eventually putting her into a wheelchair.

‘I dread the day when I’ll be confined to a wheelchair,’ she said. ‘Until then, I’m determined to make the most of the time I have left and raise awareness about SPS by sharing my story.’

STIFF-PERSON SYNDROME: INCURABLE NEUROLOGICAL CONDITION THAT LOCKS THE BODY 

Stiff person syndrome is an extremely rare disorder that makes the muscles in the torso and limbs alternate between spasming and being rigid.

Estimates suggest it affects around 330 people in the US and 70 in the UK. It remains little understood. Around twice as many women as men are hit with it.

The progressive disease sees patients’ stiffness increase over time and can lead to them needing to use a wheelchair. 

There tend to be three types of the syndrome:

  • Classical person man syndrome: When rigidity and spasms are around the back and stomach, and occasionally thighs and neck. It can cause back curvature over time.
  • Stiff limb syndrome: Spasms especially affect the legs and feet, occasionally causing them to become fixed in place. Hands can also be affected.
  • Jerking stiff person syndrome: The rarest, most aggressive form, which includes symptoms from both the others, and also affects the head and eyes.

Experts do not know exactly what is behind the disease. 

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

Around 40 percent of sufferers also have type 1 diabetes, another autoimmune disease. Type 1 diabetes is particularly associated with classical person syndrome.

Other autoimmune conditions like vitiligo, which causes white patches of skin, and pernicious anemia are likewise associated with it.

It is also more common in people with breast, lung, kidney, thyroid or colon cancer, as well as lymphomas, but researchers do not yet know why. 

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

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

What are its symptoms? 

The main symptoms caused by stiff person syndrome are spasms and rigidity of the torso and limbs.

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

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

The spasms can be so severe they cause people to fall over or lead to difficulty walking and other disability.

Stress and anxiety are also usually higher in those with the condition, particularly because of the unpredictability of spasms.

The lack of GABA — which regulates anxiety — in their system also affects mental health. 


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