I have stiff person syndrome like Celine Dion — I cry and fight for my life every day

Celine Dion’s stiff person syndrome (SPS) diagnosis is bringing awareness to the rare disorder that many people only heard about for the first time since her revelation last year.

Now, other patients who suffer from the incurable, paralyzing neurological disorder are speaking out and sharing their experiences.

Jennifer Trujillo, from Bonney Lake, Washington, revealed she has lived with SPS for three years and has felt the pain of “every bone break.”

“I feel like I have lost everything, my freedom, my singing, my studying, and I live in pain constantly,” Trujillo, 39, told NeedToKnow. “I’m fighting for my life every day.”

Stiff person syndrome is a rare neurological disorder that causes progressive muscle stiffness and repeated episodes of painful muscle spasms, according to the National Organization for Rare Disorders.

Trujillo was diagnosed with SPS in 2020 while battling other medical conditions including amyotrophic lateral sclerosis, dysautonomia, hypermobile Ehlers-Danlos, gastroparesis and a mast cell.

“[The pain] started with a constant spasm in my back,” said Trujillo, who first felt symptoms after a fall in 2015. “My spasms spread from my head to my legs. The pain was unbelievable.”

Although she sought medical help from “countless doctors,” they couldn’t explain what was going on.

“I’d been through ablation procedures [which treat atrial fibrillation] throughout 2016 for nerve pain,” she added. “The procedures didn’t work.”

As her condition worsened, Trujillo had to step away from her life as a full-time psychology student and singer-songwriter working on an album.

“All of this was slowly being taken away from me,” she continued. “I was crying every day, while in the bath, folding clothes, everywhere.”

The married mother of six was desperate for a solution after a severe fall in 2019.

“I found a neurologist myself, hoping they could help me,” she confessed. “But soon after seeing me, she actually referred me to an Alzheimer specialist.”

The neurologist believed Trujillo could have SPS but advised her to find another medical professional who specialized in the rare neurological disorder.

“By this point, the spasms had spread to my entire body,” she said. “I was Dorothy turning into the Tinman.”

Trujillo finally received her SPS diagnosis from a specialist in Michigan who specialized in the disorder and was put on medication to ease her pain and spasms.

Although it helped, she still experienced frequent attacks, which contributed to her losing 30 pounds in just two months.

“I have about four attacks a week; they last for hours and I’m wide awake when they do,” she shared.

Trujillo has relied on oxygen and palliative care — specialized medical treatment that focuses on providing relief from pain — for more than two years while battling her other conditions.

“I’m losing function of my right arm, which I need for my motorized wheelchair,” she added. “I have a torn shoulder, broken teeth and stress fractures.”

Trujillo admitted she has broken bones for which she won’t go to the hospital because she doesn’t want to miss any more time with her family.

“I’d like to take my kids to a concert and not have to be carried out because I had an attack,” she sighed.

However, she is determined to find a solution for the neurological disorder. She is in the process of getting intravenous immunoglobulin (IVG), a therapy treatment for patients with antibody deficiencies.

“I will die if I do not get the treatment,” she confessed.

Trujillo admires Dion’s commitment to shine a light on stiff person syndrome after she was asked to appear in a music video to bring awareness to SPS.

“For that, I am grateful more people know about it, and I like to educate people as much as I can.”

Other people who suffer from SPS have spoken out about their medical condition since the “My Heart Will Go On” singer disclosed her illness earlier this year.

Andrea and Ian Rawlins have shared their experience about the realities of the disease to reduce any false hopes of a miraculous recovery by the pop icon.

“The more spasms he has, the harder it becomes,” the U.K. woman, 54, told South West News Service while describing the condition her 58-year-old husband has dealt with for 18 years.

Meanwhile, Dion continues to fight the disorder — and insists she will be back on stage performing again one day.

“I have a great team of doctors working alongside me to help me get better and my precious children who are supporting me and giving me help,” she said. “I’m working hard with my sports medicine therapist every day to build back my strength and my ability to perform again but I have to admit it’s been a struggle.”