A woman who has the same condition as Celine Dion has shared how she feels every bone she breaks.
Jennifer Trujillo started feeling symptoms of stiff person syndrome (SPS) after a fall in 2015.
For years, the now 39-year-old was diagnosed with multiple diseases, including amyotrophic lateral sclerosis, and doctors put it down to stress – but in 2020, she was diagnosed with SPS.
Stiff person syndrome is a rare autoimmune neurological disorder that most commonly causes muscle stiffness and painful spasms that come and go and can worsen over time.
“It started with a constant spasm in my back,” Jennifer, from Bonney Lake, Washington, US, told NeedToKnow.
“I saw countless doctors as the pain was unbelievable.
“My spasms spread from my head to my legs and I’d been through ablation procedures throughout 2016 for nerve pain but the doctor still couldn’t explain it.
“The procedures didn’t work.
“I was a full-time psychology student and a singer-songwriter, I was in a band and working on an album.
“But all of this was slowly being taken away from me.
“I was crying every day, while in the bath, folding clothes, everywhere.”
Jennifer claims she was told by doctors that it may be down to stress, and for her to go to psychotherapy.
But after seeing a neurologist, they knew something more sinister was happening.
She said: “I had another fall in 2019, so I found a neurologist myself hoping they could help me.
“But soon after seeing me, she actually referred me to an Alzheimer specialist.
“Eventually he was the one who first told me I could have SPS, but couldn’t help me as he did not specialise in it.
“By this point, the spasms had spread to my entire body.”
In June 2020, Jennifer had another attack at a doctor’s office and was then sent to the emergency room, where they couldn’t find out what was wrong with her.
Finally, she contacted a doctor 2,200 miles away in Michigan, who specialised in rare diseases.
The following month, she was diagnosed with SPS.
She said: “I felt vindicated.
“I was Dorothy turning into the Tinman.”
After this, Jennifer was put on medication to help with the pain and spasms, however, they were still happening so often that she lost 30lbs of weight in two months.
She has now been on oxygen and palliative care for over two years, which her family helped her with, and struggles with a number of other conditions.
She is married to Victor, 42, and together they have had Brianna, 19, Katdence, 16, Landen, 14, Tawni, 31, Jakobe, 10, and Athena, who is seven years old.
Jennifer said: “I have SPS, dysautonomia, hypermobile Ehlers Danlos, gastroparesis, mast cell, and even more.
“I’m losing function of my right arm which I need for my motorised wheelchair.
“I have a torn shoulder, broken teeth, and stress fractures.
“I feel like I have lost everything, my freedom, my singing, my studying, and I live in pain constantly.
“I have about four attacks a week, they last for hours and I’m wide awake when they do.
“I feel every bone break.
“I’m fighting for my life every day.”
Celine Dion’s struggle with SPS has also helped raise awareness.
She said: “I was contacted only after she revealed her diagnosis to do articles and documentaries.
“I was in her music video to raise awareness too.
“For that, I am grateful more people know about it, and I like to educate people as much as I can.”
Jennifer is now currently in the process of trying to get an IVIG, also known as intravenous immunoglobulin, a therapy treatment for patients with antibody deficiencies.
She said: “I will die if I do not get the treatment.
“I have broken bones even now that I won’t go to the hospital for.
“I’m missing time with my family, I miss myself, and the person I used to be.
“I miss music, I’d like to take my kids to a concert and not have to be carried out because I had an attack.”
