'I've same condition as Celine Dion - I don't go to hospital when I break bones'
A woman with the same condition as Celine Dion has revealed how she spent years trying to get a diagnosis for her mysterious and agonising pain.
Jennifer Trujillo began feeling the symptoms of stiff person syndrome (SPS) after she experienced a fall in 2015. The 39-year-old had previously been diagnosed with several other conditions, including amyotrophic lateral sclerosis, but doctors put her pain down to stress. It was only in 2020 that she received the stiff person syndrome diagnosis.
Stiff person syndrome is an uncommon autoimmune neurological disorder that typically prompts muscle stiffness and painful spasms which come and go, and tend to get worse over time. Speaking to NeedToKnow, Jennifer from Bonney Lake in Washington said: "It started with a constant spasm in my back. 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.
Jennifer in a wheelchair (Jam Press)
Jennifer in hospital (Jam Press)“I was crying every day, while in the bath, folding clothes, everywhere.” Jennifer states that she was informed by doctors that this could be due to stress, and she should attend psychotherapy. However, having seen a neurologist, it was apparent something else was going on. She explained: "I had another fall in 2019, so I found a neurologist myself hoping they could help me.
Baby boy has spent his life in hospital as doctors are 'scared' to discharge him
“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 experienced another attack at a doctor's office and she was sent to an emergency room, but they still couldn't identify the problem.
Jennifer after a seizure (Jam Press)Eventually she got in touch with a doctor 2,200 miles away in Michigan, who specialised in rare diseases. Then the next month, she was diagnosed with SPS. She said: “I felt vindicated. I was Dorothy turning into the Tinman.” Following this, Jennifer was put on medication to assist with the pain and spasms but they were still happening so frequently she tended to lose 30lbs of weight in two months.
Now she has been on oxygen and palliative care for over two years, which her family assisted her with, and she also experiences a number of other conditions. She is married to 42-year-old Victor and together they have 19-year-old Brianna, 16-year-old Katdence, 14-year-old Landen, 31-year-old Tawni, 10-year-old Jakobe and seven-year-old Athena.
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.” But 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.”
Read more similar news:
Comments:
comments powered by Disqus
