And now, a Florida woman has opened up about her life with SPS and provided the public with a first person account of the life she, Celine and others with the condition are living.

Jomana Houssari, 31, is an aspiring police officer from Bradenton and was pursuing a degree in criminal justice when she was diagnosed with SPS.

‘I’ve had health challenges since I was little,’ Jomana explained. ‘I was born prematurely, weighing just 2 lbs 9 oz (1.1kg), which led to hernia surgery right away. During my teenage years, I dealt with autoimmune and neurological conditions.

‘Then, in 2015, a major car accident turned my life upside down. I was hit by a truck going at least 60mph, which sent me into oncoming traffic, and then another vehicle hit me at full speed. I couldn’t move at all and was rushed to the hospital. I had to wear a neck brace for over a month and undergo more than 20 surgeries.’

Three years on from the accident, Jomana relocated to a different state. Sadly, just four months into her new living arrangement, she experienced what she described as ‘a major attack’.

Picture of Jomana
Jomana has suffered with health issues since she was a child (Picture: @jomana_amira_/Cover Images)

‘All of a sudden, I couldn’t move my legs. A few minutes later, I regained function but kept experiencing leg spasms,’ Jomana recalled. ‘Initially, I received a misdiagnosis from my neurologist, who believed it to be Guillain-Barre syndrome.

‘However, it became evident that this wasn’t the correct diagnosis, so I took matters into my own hands and started doing my own research.’

As she scrolled through online articles, Jomana stumbled upon information about Stiff Person Syndrome (SPS). This exceptionally rare and incurable condition affects only one in a million individuals.

Picture of Jomana in hospital
The condition calls intense spasms (Picture: @jomana_amira_/Cover Images)

‘When I discussed the similarities between my symptoms and those of SPS with my neurologist, he admitted that he had never encountered the condition before,’ Jomana said.

Nonetheless, he tested me. It was a month-long wait for the results, but eventually, it was confirmed that I indeed had SPS.’

SPS unleashes violent muscle spasms in the patient and it was a ‘relief’ for Jomana to finally get a diagnosis. ‘But thinking about the future is pretty scary,’ Jomana shared. ‘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.

‘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.’

Picture of Jomana
She says it’s difficult to live a normal life (Picture: @jomana_amira_/Cover Images)

These challenges have forced Jomana to put her studies on hold and have robbed her of what most would consider a ‘normal’ life. The spasms she experiences now are exceptionally severe and, at times, can even lead to broken bones.

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

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

Jomana in hospital
Doctors have indicated her condition was deteriorate (Picture: @jomana_amira_/Cover Images)

Despite the hardship, Jomanan tries to maintain a positive outlook and focuses on what she can achieve rather than dwelling on the limitation. .

‘Every small step forward fills me with an incredible sense of achievement,’ she shared. ‘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.’

Despite the grim prognosis from her doctors, who have indicated that her condition will deteriorate over time, Jomana remains resolute. ‘I’ve been told that my condition will worsen, and my prognosis includes premature death,’ she revealed.

‘While it’s challenging to predict when this might happen, it usually results from complications like blood clots, infections, bed sores, or respiratory issues. I dread the day when I’ll be confined to a wheelchair.

‘Until then, I’m determined to make the most of the time I have left and raise awareness about SPS by sharing my story.’