--- title: What Is Stiff Person Syndrome? A Patient Shares Her Story description: Celine Dion just announced she was diagnosed with the rare neurological condition. Here's what it's like to have stiff person syndrome. canonical: https://time.com/6239728/what-is-stiff-person-syndrome/ author: Alice Park article:opinion: false article:content_tier: free article:published_time: 2022-12-09T21:16:13.000Z article:modified_time: 2026-02-24T15:09:07.533Z article:section: Health og:title: What It’s Like to Live With Stiff Person Syndrome og:description: “It feels like I’m walking on broken glass,” one patient said og:url: https://time.com/6239728/what-is-stiff-person-syndrome/ og:site_name: TIME og:image: https://static.time.com/v3/assets/bltea6093859af6183b/blta77de1c3cdfbf362/698a38aa16d8845f35c3b62f/GettyImages-1160265358.jpg?branch=production&width=1024&quality=75&auto=webp&crop=16:9 og:image:width: 1024 og:image:height: 576 og:image:alt: Barclaycard Presents British Summer Time Hyde Park - Day 1 og:type: article twitter:card: summary_large_image twitter:title: What It’s Like to Live With Stiff Person Syndrome twitter:description: “It feels like I’m walking on broken glass,” one patient said twitter:image: https://static.time.com/v3/assets/bltea6093859af6183b/blta77de1c3cdfbf362/698a38aa16d8845f35c3b62f/GettyImages-1160265358.jpg?branch=production&width=1024&quality=75&auto=webp&crop=16:9 ---  # What It’s Like to Live With Stiff Person Syndrome > Sponsored content. 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Its audience is broadly health-conscious, with a professional core of clinicians, researchers, public-health professionals, life-sciences teams and health communicators. ### Sources * TIME Newsletters: [time.com/newsletters](/c/time-nl-health-2026q3/newsletters?i=b756bbe2-8bce-4dba-b44e-21eac6af4791&cr=time-nl-health-2026q3-v1) ## Video: The Race to Make a Vaccine for Breast Cancer [Watch (HLS stream): The Race to Make a Vaccine for Breast Cancer](https://cdn.jwplayer.com/manifests/W5jcvwLu.m3u8) (8:09)  _Published 2022-10-05. Scientists believe there is a future in which women can be vaccinated against breast cancer._  by [Alice Park](https://time.com/author/alice-park/)  ## Alice Park Senior Correspondent Dec 9, 2022 9:16 PM UTC  Celine Dion performs during Barclaycard Presents British Summer Time on July 05, 2019 in London, England Celine Dion performs during Barclaycard Presents British Summer Time on July 05, 2019 in London, England Dave J Hogan—Getty Images  by [Alice Park](https://time.com/author/alice-park/)  ## Alice Park Senior Correspondent Dec 9, 2022 9:16 PM UTC In an emotional social-media [video](https://www.instagram.com/p/Cl5x5rIgzcX/) posted Dec. 8, singer Celine Dion informed fans that she has been diagnosed with a rare neurological disease called stiff person syndrome. A diagnosis wasn’t easy or straightforward. “I’ve been dealing with problems with my health for a long time…we now know this is what’s been causing all of the spasms that I’ve been having,” said Dion, who is 54. Here’s what to know about the condition and what it feels like. ## What is stiff person syndrome? According to the [National Institute of Neurological Disorders and Stroke](https://www.ninds.nih.gov/health-information/disorders/stiff-person-syndrome), stiff person syndrome has similarities to autoimmune disease, in which the body’s immune system attacks its own cells. The condition is linked to higher levels of antibodies that bind to an enzyme called glutamic acid decarboxylase (GAD), which works on a brain chemical, GABA, responsible for inhibiting activity in the central nervous system. GABA is normally in balance with another chemical that stimulates nerves, which, in the case of muscles, makes them contract. “Something in the software goes wrong, and the inhibitory system starts to malfunction,” says Dr. Avi Almozlino, chief of neurology at Newton-Wellesley Hospital, part of Mass General Brigham. “The inhibitory signals become weaker and weaker, and the excitatory signals start to take over, contracting the muscles uncontrollably.” People with the condition often experience muscle spasms in the trunk, arms, or legs and become more sensitive to noise and touch. Emotional triggers, including stress, can worsen the muscle spasms. Those episodes can make it difficult to walk or move to perform basic daily tasks. In her video, Dion said she isn’t able to control her vocal cords and sing in the way she once did, and therefore postponed upcoming tour dates in Europe. ## How rare is stiff person syndrome? Only about one in a million people gets stiff person syndrome, and the disease affects [twice as many women](https://www.ninds.nih.gov/health-information/disorders/stiff-person-syndrome) as men. Many people, like Dion, spend months or years trying to find the reason for their spasms, since the symptoms can mimic some other autoimmune disorders. One of the those patients is Maureen Materna, a 74-year old from Cleveland, Ohio who has been living with the condition since 2011\. Like Dion’s diagnosis, it took doctors a while to reach hers. “I was always very active—I walked, biked and exercised, and was one of those people that does 20 millions things at one time,” Materna says. Then, she started getting intense cramps in her feet and legs that wouldn’t go away. The episodes would last about 45 minutes and leave her screaming in pain. But otherwise, she was healthy. After a visit to the emergency room, doctors gave her a Valium drip to address the pain, which helped, but she still didn’t know why she was experiencing spasms. Two years and about 20 doctors later, a neuromuscular specialist finally diagnosed her with stiff person syndrome, based on her symptoms and the fact that Valium was the only intervention that seemed to alleviate some of the pain. “To this day when I see doctors for something else and they see that I have stiff person syndrome, I cannot tell you how many \[of them\] have said, ‘What is that? I’ve never heard of it.’” --- ### More from TIME --- ## What does it feel like to have stiff person syndrome? Materna can’t sit for long periods of time, so even if she’s watching television, she has to get up every 20 minutes or so. Her muscle-locking means she can’t accompany her husband and their grandchildren to shows, where she would have to sit for lengthy periods of time. Until last year, bedroom slippers were the only footwear that made her feet comfortable. She walks every day, to keep herself active, but it’s a challenge. “It feels like I’m walking on broken glass,” she says. “But I’m not the type to lay in bed. I like to see my neighbors and distract myself and kind of forget that the pain is there.” ## What causes stiff person syndrome? While it’s not clear what triggers the syndrome in people who don’t show signs of immune system disorders beforehand, one theory is that stiff person syndrome could be the immune system’s very early response to cancer. “I’ve had some patients who initially presented with stiff person syndrome, and one to two years later, developed cancer,” says Dr. Robert Wilson, a neurologist at Cleveland Clinic and Materna’s physician. “The body may be sensing early cancer and generates an immune response to those early cancer cells with antibodies that cross react with the nervous system. These patients get their cancer treated and do improve.” But there are no definitive studies yet confirming this potential cause of the syndrome. Others develop stiff person syndrome after different health issues, including bouts of viral infections or stressful experiences that may trigger the immune system in a dysfunctional way. “It needs to be studied more why some people develop stiff person syndrome and not others,” says Wilson. ## Can people recover from stiff person syndrome? Currently, the treatments for the condition include muscle relaxants and anti-convulsant medications, which can alleviate some of the symptoms of the condition, as well as IV antibody treatments that try to reset the immune system to dial down its attack on the body’s own cells. The monoclonal antibody medication rituximab (Rituxan), which is prescribed to treat certain autoimmune diseases and cancers, can also help. But people can have varying responses to these therapies, says Wilson. “Some patients are rapid responders after a few treatments—they get their immune systems rebooted and recalibrated. And there are others who don’t respond as well, so we focus on symptomatic relief, which can also help them from getting worse.” Materna tried getting infusions of an immunoglobulin, IgG, which helps to bolster the immune system, but the treatment didn’t help her significantly, and she stopped after about six years. She also tried plasmaphoresis, which involves regular removal and cleansing of plasma to remove the abnormal antibodies attacking the body’s immune cells. She developed a blood clot from the port required for the procedure and couldn’t continue. Next, Materna tried [ketamine infusions](https://time.com/4876098/new-hope-for-depression/) to help with headaches, but those didn’t improve her symptoms either. She now takes Valium four times a day for pain, as well as a muscle relaxer, and does deep breathing exercises and meditation. Each time she visits her doctor, Materna and her husband ask if there are any new treatments she can try, and the answer so far has been no. But she’s hopeful that with Dion’s diagnosis,more attention will be paid to the rare disease. “Maybe with her having it, scientists will start researching it more,” she says. “It’s a hard disease.” ## Transcript Vaccines are often called The Miracle of modern medicine for their ability to Target the immune system against disease-causing, viruses and bacteria. Since they work against infectious diseases, why not against other conditions that have long plagued Humanity like cancer. To say we're working to develop a vaccine to prevent Cancers and individuals for the rest of your life. It sounds like Star Wars but it's not a concept that's totally unchartered me vaccines against human papillomavirus which is causative agent in certain types of human cancers. Work to prevent cancer in those individuals who get vaccinated and so are we? We no longer is nikoli more about the immune system in the last 20 years in the face of cancer. Studies and cancer. And now it's covid that we can bring this knowledge to this big goal of using a new system to prevent all types of cancers and and do so with humility and optimize the immune response against cancer by training cells to recognize tumors as foreign. Once that happens in breast cancer, it may be possible to not only prevent Prince's in people who have already had cancer, but to even prevent it in the first place, I was diagnosed in 1987 and I wasn't treated much differently from what the treatments or today. Oh, wow. Yes, there's a lot of focus on immunotherapy and that's exciting. It's exciting from a research perspective but it hasn't really made a difference in women's lives. Yet, we believe that a vaccine approach is certainly the key and primary prevention or preventing people from getting breast cancer to begin with because we believe that that is the future, that that is one of the areas that we should be focusing on now. We believe not only will it save lives, but it will also be less toxic than existing Therapies. You know, technologies that have have been developed over the past five to ten years. Are number one, immune checkpoint Inhibitors. So, immune checkpoint Inhibitors is a form of therapy that has been you know now approved by the Food and Drug Administration for use in targeting a number of different cancers were, we had has been effective lasso in in certain tumors. And so, the reason that vaccines don't work against metastatic deposits of tumor is because the tumors themselves. Throw up a number of Walls that ultimately prevents the immune response from acting and killing the tumor. So the whole idea just like an infectious disease, vaccine used to identify what's foreign in the tumor as much as possible and to really craft A vaccine that targets what's foreign because that's really word. You know we're going to see the power of the immune response and in shrinking or preventing a cancer is having multiple targets within the tumor. But also having them be very foreign at the Mayo. Clinic Newton has developed a vaccine targeting, a very early form of breast cancer called ductal carcinoma inside you or DC, is he is working with his colleague dr. Amy degnan to test that vaccine experts, have debated in recent years, whether dcis is actually cancer since it involves lesions that remain in the ducts of the breast tissue and don't spread throughout the breast as other forms of breast cancer. Do about 50 1,000 women. A year are diagnosed with DC is in the US and some of those cases will become cancerous. Although doctors, can't predict which one As a result many women with the condition up to have radiation and surgery to remove the lesions to avoid the risk of developing cancer. if the immune system could be trained to attack tcis instead that would potentially help women to avoid the more invasive treatments, which some experts believe might be over treating their condition We are interested in pushing forward, you know, toward a goal of vaccines for breast cancer prevention. And so one strategy to do that is to then evaluate a vaccine that we found was safe and women who had invasive cancer and apply it to women who don't have invasive cancer yet who have this dcis and evaluate what kind of immune response we see in those women. And one of the things that were specifically interested in this study to see is what kind of response do we see in the breast tissue after this vaccine is given, can we find evidence that the immune system is reacting to the vaccine and potentially, you know, trying to clear out these cancer cells in the breast tissue. So, in this trial, we give the vaccine for several doses of the vaccine before surgery, and women who have dcis. And then at the time of We're removing their dcis as we would not normally to treat it, but we're also able to then investigate the breast tissue and the area of DCs and and see what is happening with the immune response there after the vaccine, the team at the Abramson Cancer Center, at Penn Medicine, is studying a different approach to a breast cancer vaccine. They are currently a rolling about 16th bull who have been diagnosed with cancer and who have the genetic mutations, bcra one or bcra to which put them at higher risk of developing breast cancer to see if vaccinating them will lower their chance of recurrence. The researchers also had to study a couple dozen people with the genetic risk, but who has not yet been diagnosed with cancer to see if the vaccine could lower their risk of ever developing the disease. It's a, it's a game changer and we recognize that we have a ways to go. But right now, if you're a 25 year old woman who has undergone genetic testing and is told that you have a safe for me to yishun, you're talkin about raining for the rest of your life for your breasts or deciding to do a bilateral, mastectomy have your breasts removed and at this point we had no effective screening for ovarian cancer. And so we strongly recommend that individuals have their ovaries removed between ages, 35 and 44 a beer, signaling carrier, putting them into early menopause. And with all the attendant Dallas ring consequence that we really have not had great options apart from surgical options. And, you know, we're working on many different types of strategies to try alternative National the natural history. But this concept of immune interception being able to use the immune system to change the natural history for these individual is so critical. We are probably at the end of the era of using cancer, vaccines with great hope in a patient, whose party been treated with everything in the tumor is still Advanced to using these vaccines and all our new knowledge in patients, who are at risk for relapse or individuals who are simply a high risk for cancer and we want to prevent so prevention. 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