Celine Dion's openness about stiff person syndrome (SPS) has put this rare condition in the spotlight. People with SPS, like her, face tough battles daily, showing how challenging it can be to live with this often misunderstood disorder.
More and more people with stiff-person syndrome (SPS) are now sharing their stories, shedding light on this incurable neurological disorder.
Jennifer Trujillo, living in Bonney Lake, Washington, bravely spoke up about her three-year battle with SPS, describing the pain as feeling like "every bone breaks," highlighting the intense struggle many face with this condition.
“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, as defined by the National Organization for Rare Disorders, is a rare neurological condition characterized by increasing muscle stiffness and recurring, painful muscle spasms.
In 2020, Trujillo received a diagnosis of SPS while contending with several other medical conditions, such as amyotrophic lateral sclerosis, dysautonomia, hypermobile Ehlers-Danlos, gastroparesis, and mast cell issues.
“[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.”
Despite seeking guidance from numerous doctors, none could provide an explanation for her condition or its symptoms.
“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 suspected Trujillo might have SPS but recommended seeking out a specialist specifically trained in this rare neurological disorder for a more accurate diagnosis and treatment.
“By this point, the spasms had spread to my entire body,” she said. “I was Dorothy turning into the Tinman.”
Finally, Trujillo obtained her SPS diagnosis from a specialized expert in Michigan who focused on this disorder. She was then prescribed medication to alleviate her pain and muscle spasms.
While the medication provided some relief, Trujillo continued to endure frequent attacks, leading to a rapid weight loss of 30 pounds within a mere two months.
“I have about four attacks a week; they last for hours and I’m wide awake when they do,” she shared.
For over two years, Trujillo has leaned on oxygen support and palliative care, a specialized form of medical treatment aimed at alleviating pain, as she continues to navigate her battle with multiple concurrent 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.
Despite the challenges, Trujillo remains resolute in her quest to tackle the neurological disorder. She's currently pursuing intravenous immunoglobulin (IVIG) therapy, a treatment aimed at addressing antibody deficiencies, as part of her determined effort to find a solution.
“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 experiences 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.
Amid her battle, Dion remains steadfast in her determination to overcome the disorder, expressing her firm belief that she will grace the stage once more, performing again in the future.
“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.”