Jennifer Trujillo opens up about Stiff Person Syndrome battle

A former musician has opened up about her debilitating experience with a disease that affects just one in a million people.

A former musician has opened up about her debilitating experience with Stiff Person Syndrome (SPS) – saying caregivers thought she was “possessed” because of what her body was doing.

The incurable condition – which Canadian singer Celine Dion was diagnosed with last December – affects just one in a million people. Sufferers experience intense, painful muscle contractions – so violent that they can dislocate joints and even break bones. A significant proportion of those with the illness ultimately become immobile and require the use of a wheelchair.

For Washington-based woman Jennifer Trujillo, the rare neurological disorder is “like a seizure meets the exorcist”, she said in an interview with SEEN TV.

“I’ve scared caregivers who thought I was possessed because of what my body was doing,” she said.

A former musician has opened up about her debilitating experience with a disease that affects just one in a million people. Picture: Supplied

‘I’ve scared caregivers who thought I was possessed because of what my body was doing,’ Jennifer Trujillo said. Picture: Supplied

Ms Trujillo, a musician, first experienced back pain and spasms in 2017. Because she was pregnant at the time, she shrugged it off as prenatal discomfort.

“After I delivered [my baby], the spasms got worse. In 2017, it spread to my legs,” she said.

Based in Washington, Ms Trujillo travelled interstate to find answers – and was eventually diagnosed with SPS after suffering an attack during a doctor’s appointment.

“I didn’t understand exactly what was going on, and what was going to happen to me,” she recalled.

‘I can’t even make it through vocal warm-ups because I can’t handle the trigger of the sound.’ Picture: Supplied

What Ms Trujillo didn’t realise at the time was that the condition wouldn’t just affect her physically, but destroy her career.

“The triggers for SPS are usually sound, touch, light, cold, heat. And as a singer, that is huge,” she said.

“I can’t even make it through vocal warm-ups because I can’t handle the trigger of the sound. This disease has taken so much of my identity that I’ve tried to kill myself.”

Canadian singer Celine Dion shared her diagnosis with SPS in December 2022. Picture: Philippe Lopez/AFP

When suffering an attack, Ms Trujillo said “your muscles feel like they’re fighting and ripping each other apart”.

“During my attacks, I have to take a high dose of muscle relaxers to stop it. It’s torture – and it can last hours,” she said.

“It will wake me up in the middle of the night and I will be stuck in a position until somebody finds me because I can’t scream – because it closes off my throat.”

The more she tries to sing, “the more it progresses the disease, the more spasms and attacks I have”.

The more Ms Trujillo tries to sing, ‘the more it progresses the disease’. Picture: Supplied

‘I might not be able to sing and reach people that way, but I still have a voice.’ Picture: Supplied

Despite the hardships, however, Ms Trujillo said “this condition made me stronger”.

And while she can no longer express herself through singing, she has found a new voice in advocacy.

“I might not be able to sing and reach people that way, but I still have a voice,” Ms Trujillo said.

“And I’ve chosen to use it to help other people who are struggling … I’m here. I’m not going anywhere any time soon, because I’m going to keep fighting.”

Originally published as Jennifer Trujillo opens up about Stiff Person Syndrome battle