Woman diagnosed with Stiff Person Syndrome at 30 says first symptom caused her to 'wake up screaming'
A woman who was diagnosed with Stiff Person Syndrome, has revealed the sign that led her to seek help, and how Celine Dion’s documentary changed her life.
Jessica Forgues is 35 years old and from Quebec, Canada, and was medically retired at age 30 due to her condition.
As a previous worker in Parliament as an Executive parliamentary assistant, she had to put her career on hold after developing a painful symptom one year prior – leaving her ‘screaming’ in the middle of the night.
Speaking to UNILAD, Jessica explained all the ways she was treated before finally getting answers in the form of Stiff Person Syndrome (SPS), an incurable condition that is categorized as a neurological autoimmune disease by the Cleveland Clinic.
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There, it states the condition is ‘rare’ and a person with SPS ‘may become more prone to falls and injury’ as it progresses.
For Jessica, her sign began at age 29, when she 'stared having regular muscle spasms in my calves.’
She told UNILAD: “At first it was just annoying but they became so painful I would wake up screaming.”
This pain is what led her to see the family doctor to then ‘prescribed me magnesium’.
Calf muscle spasms can also be a sign of a magnesium deficiency, however, this treatment route didn’t work.
“Then we tried a muscle relaxant,” Jessica explained. But things were getting worse.
She said: “At this point I was experiencing spasms in my face, arms, and legs. No medication made any difference the symptoms just continued to worsen very rapidly. The doctor then suggested it was probably all in my head and I should talk to someone. But I knew something was wrong.”
That’s when she said she was advised by her chiropractor to capture the spasms on camera.
After filming it, Jessica said ‘she sent it to her contacts and I had a neurologist within 4 days.’
After a year of no luck in finding out what was going on, she explained she was finally diagnosed at 30 by a neurologist.
She said: “When I first received the diagnosis, I didn’t really understand the severity of it. But then the hard realities came. I was medically retired. Not sick leave or disability. Medically retired forever.”
Her diagnosis soon changed her life, and as the symptoms would fluctuate in severity, she said it ‘affected every single part of my life.’
Jessica revealed: “I’m unable to tilt my head or bend down without fainting. Meaning things as simple as washing my hair, or bending down to pick up after sweeping have become an Olympic chore.”
With spasms that have been strong enough to injure her, Jessica said awareness of the topic has been a hard ride.
Prior to Celine Dion’s diagnosis, she said nobody knew what SPS was.
But after the singer announced her diagnosis to the world, ‘it made a world of difference.’
Jessica said: “I finally had a reference so I could say I have SPS like Celine Dion. It made a world of difference for awareness and just general knowledge. She released an amazing documentary that really did allow people to see the severity of the disease. She was vulnerable and really allowed people a glimpse into just how painful this disease is. “
But Jessica explained that the battle is costly to treat the condition.
Right now, she says she’s still fighting the good fight, and also sharing the humor in her life via her TikTok channel, @mybody_mybattle.
Britt Jones