Health
Stiff person syndrome patients share what it’s like to live with the rare disease
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A little-known neurological disorder has been thrust into the spotlight after a documentary revealed singer Celine Dion’s struggle with stiff person syndrome (SPS).
The disease is rare, affecting only one or two people for every million. Yet for those who are diagnosed, it can have a devastating impact, causing muscle rigidity, pain and spasms.
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Two people who are living with stiff person syndrome — Carrie Robinette, 45, from San Diego, California, and Corwyn Wilkey, 44, who lives in Anchorage, Alaska — shared with Fox News Digital the details of their experience.
Path to diagnosis
Robinette, a Navy wife and mother who was working as a full-time defense consultant, had been dealing with multiple health issues — pain, neuropathy, fatigue, migraines, asthma, allergies, thyroid and endocrine issues, kidney issues, even cancer — for more than 15 years.
“I was honestly ‘always sick’ from the time I was born,” she said in a phone interview with Fox News Digital.
Two people who are living with stiff person syndrome — Carrie Robinette, 45, from San Diego, California, at left, and Corwyn Wilkey, 44, who lives in Anchorage, Alaska, right — shared with Fox News Digital what their experiences have been. (Carrie Robinette/Corwyn Wilkey)
“Also, even as far back as high school, I had incredibly tight muscles in my legs, and there were countless times that I woke up crying with charley horse cramps in my calves.”
Then, in May 2023, Robinette began experiencing painful, full-body spasms.
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That kicked off a year of testing and visits to specialists in rheumatology, nephrology, endocrinology and neurology.
“After learning more and going back through my medical history, we realized that symptoms we previously blamed on other causes were likely early signs of stiff person syndrome.”
Over the last year, as Robinette’s “constellation of symptoms” intensified, the doctors finally narrowed it down.
“It is beyond frustrating to literally not know at the start of each day if it will be a good day or a bad day.”
“There is not a consensus within the SPS community on exact diagnostic criteria, and some doctors seem hesitant to diagnose rare diseases, so the journey to diagnosis is complicated by how rare the illness is,” Robinette said.
“Definitive testing is not readily available.”
Robinette, at left, receives treatment for her stiff person syndrome at a San Diego hospital. (Carrie Robinette)
These days, Robinette’s biggest challenge is frequent pain.
“Even if my body is not actively spasming, it feels like my muscles are sore, even bruised — all day, every day,” she said. “I think eventually, we grow accustomed to our pain, so it just becomes the new normal.”
Some days, Robinette can walk and move “almost like normal,” while other days she can’t walk without a cane or walker.
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She regularly uses a mobility chair when traveling any distance beyond 50 feet.
“It is beyond frustrating to literally not know at the start of each day if it will be a good day or a bad day.”
‘Initial symptoms’
Wilkey, a father of young children who works as an interpretive media publications specialist for Alaska State Park and is also a singer, first noticed muscle spasms in his larynx while performing with his band.
As a musician, Corwyn Wilkey said his symptoms share some similarities to Celine Dion’s. “My initial symptoms were throat and facial spasms that have progressed into full-body seizures,” he told Fox News Digital. (Corwyn Wilkey)
“Like Celine Dion, my initial symptoms were throat and facial spasms that have progressed into full-body seizures,” he told Fox News Digital via email.
Wilkey was officially diagnosed with stiff person syndrome in 2021 at the Mayo Clinic in Rochester, Minnesota.
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“The most prominent physical challenges are muscle stiffness and rigidity, seizure-like muscle spasms, cognitive distortion and decline, chronic pain and fatigue, PTSD, loss of coordination and fine motor control, headaches, joint pain, back pain, and inability to coordinate my body the way I want to,” he said.
Wilkey’s full-body spasms are sometimes strong enough to dislocate and even fracture bones, he said.
James Chung, M.D., PhD, chief medical officer at Kyverna Therapeutics in Emeryville, California, noted that diagnosis of stiff person syndrome is a complex process. (He has not treated either of the patients mentioned in this article.)
James Chung, M.D., PhD, chief medical officer at Kyverna Therapeutics in Emeryville, California, said a diagnosis of stiff person syndrome is a complex process. (Dr. James Chung)
“We start with a detailed clinical evaluation, looking for characteristic muscle rigidity and spasms,” Chung, who focuses on drug development for autoimmune diseases, told Fox News Digital via email.
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Blood tests are also needed to detect the antibodies that are found in a majority of cases, he said.
“Given the rarity of SPS, patients often feel misunderstood, even by health care professionals.”
“Electromyography (EMG) is essential, showing continuous motor unit activity in affected muscles,” he said.
In many cases, doctors will perform a lumbar puncture (spinal tap) to analyze cerebrospinal fluid for elevated antibodies and to rule out other conditions, along with imaging scans.
“SPS is often a diagnosis of exclusion due to its rarity,” Chung said.
Limited treatments
While there is currently no cure for stiff person syndrome, therapies can help manage symptoms and improve patients’ quality of life.
Treatments are highly personalized for each patient, according to Chung.
Robinette shows what her life looks like with SPS. “For now, unfortunately, I am currently battling my condition without any helpful medications.” (Carrie Robinette)
In most cases, patients take medications like diazepam and baclofen to reduce muscle stiffness and spasms, and may take intravenous immunotherapies to help reduce autoantibodies.
“Pain management often involves a combination of medications,” Chung said. “Physical and occupational therapy are vital.”
Some current medications can have intense side effects, however.
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Robinette has experienced hallucinations, loss of muscle control, nausea, vomiting and brain fog.
“For now, unfortunately, I am currently battling my condition without any helpful medications, and it is nearly unbearable,” she said.
Kyverna Therapeutics is currently developing a new CAR-T cell therapy, KYV-101, that aims to “reset” the immune systems of patients with autoimmune diseases, according to Chung.
Wilkey, pictured with his children, endured a dark time after his diagnosis. “I lost everything — my marriage, all my money, my home and even my children for a time,” he said. (Corwyn Wilkey)
“This approach could potentially offer a more targeted treatment that addresses the root cause of SPS rather than just managing symptoms,” he said.
The drug has recently gotten FDA approval to enter phase 2 clinical trials.
“I can really see it being the life-changing treatment that so many people with SPS and other autoimmune conditions need,” said Robinette. “I just wish science moved faster!”
Mental and emotional effects
Many patients with stiff person syndrome struggle with anxiety about experiencing spasms in public, which often leads to social isolation, according to Chung.
“Depression is common, stemming from chronic pain, loss of independence and the disease’s unpredictable nature,” he told Fox News Digital.
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“Patients also frequently experience frustration with the medical system due to misdiagnosis or dismissal of symptoms,” he added.
“Given the rarity of SPS, patients often feel misunderstood, even by health care professionals.”
When Wilkey received his diagnosis, he struggled with treatment-resistant depression, PTSD and complex regional pain syndrome, he told Fox News Digital.
“This past year, on my journey with SPS, my family and I have really been put through the wringer,” Robinette told Fox News Digital. (Carrie Robinette)
“The difficulties associated with the disease destroyed my marriage and, for a time, turned me into a rage monster,” he said.
“It has felt very much like receiving a death sentence.”
To treat his “incredible” pain, Wilkey was prescribed oxycodone and morphine, which ultimately led to addiction.
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“I became unable to function and felt like a burden on my family, which led me to attempt suicide,” he said.
Wilkey underwent a period of hospitalization, intensive therapy and pain rehabilitation programs.
“I lost everything — my marriage, all my money, my home and even my children for a time,” he said.
Today, Wilkey continues to participate in palliative care therapy, as well as psychedelic-assisted therapy for PTSD and depression. (Corwyn Wilkey)
Today, Wilkey continues to participate in palliative care therapy — as SPS is considered a progressive and terminal disease — as well as psychedelic-assisted therapy for PTSD and depression.
Robinette has also experienced mental and emotional challenges stemming from her disease.
“This past year, on my journey with SPS, my family and I have really been put through the wringer,” she told Fox News Digital.
“It takes a toll to feel like you are in a medical crisis and yet know that even if you go to the hospital, no one will help you.”
“Seizing, in 10 out of 10 pain, losing control of muscles, and having the body twist and contort into a terrifying, seemingly endless episode — some of these events last 10 to 60 minutes, which feels like an eternity.”
The hardest part, she said, is that some doctors have told her, “It could be in your head,” or “We can’t help you because we aren’t sure what it is.”
“It takes a toll to feel like you are in a medical crisis and yet know that even if you go to the hospital, no one will help you,” Robinette said.
Celine Dion was diagnosed with stiff person syndrome in 2022. (Neilson Barnard/Getty Images for The Recording Academy)
“I think it would make a world of difference to SPS patients to not have the added stress of having to constantly have to advocate for care.”
Stress management is crucial for SPS patients, Chung said, as emotional stress can trigger or worsen spasms.
“Supporting mental health is a key component of comprehensive SPS care.”
Who is most at risk?
Stiff person syndrome is a progressive and ultimately terminal neuromuscular autoimmune disease.
SPS shows certain demographic patterns, Chung said.
“It is incredibly empowering to know that you are not alone.”
“Women are more commonly affected, with a 2:1 ratio compared to men,” he said.
The typical age of diagnosis is between 30 and 60 years of age.
“There’s a strong association with other autoimmune disorders,” Chung said, which can complicate the diagnosis process.
“About 30% to 40% of SPS patients have type 1 diabetes, and we see higher rates of thyroiditis, vitiligo and pernicious anemia,” the doctor went on.
“This clustering suggests a genetic predisposition to autoimmunity, although we haven’t identified specific genes for SPS.”
Advice for handling a diagnosis
For those who are living with stiff person syndrome, Chung said the best course of action is to get education from reliable sources and to build a strong support network.
“Work closely with a multidisciplinary medical team, be proactive in your treatment and communicate openly with your health care providers,” he advised.
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The doctor also recommended practicing stress-reduction techniques and staying as physically active as safely possible under professional guidance.
Robinette is pictured with her husband, Jared Robinette, who she said has given her “incredible support” throughout her struggle with stiff person syndrome. “He has been at my side through every terrifying episode,” she said. “He has gone above and beyond caring for me. I am truly lucky to have such a kind and thoughtful partner.” (Carrie Robinette)
Wilkey’s best advice: “Don’t try and go it alone.”
He said, “You will drive yourself insane and beat your head against the wall, trying to cope on your own. Connecting with other survivors and developing a solid support system of crucial allies is essential.”
For Robinette, sharing her story has been a helpful coping mechanism.
“It is incredibly empowering to know that you are not alone,” she said.
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“I believe that the more our voices rise, the more chance we all have of being heard.”
Those seeking more information and resources for stiff person syndrome can visit The Stiff Person Syndrome Research Foundation at www.stiffperson.org.
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The New York State Department of Health has announced the highest number of flu hospitalizations recorded in a single week.
The state confirmed the uptick in hospital visits in a press release on Jan. 2, as flu cases continue to rise in the region and nationwide.
New York State, including New York City, has consistently tracked the highest numbers of recorded respiratory illness cases in the country for the last few weeks, according to CDC data. Several other states have climbed to the “very high” category for respiratory activity as well, as of the week ending Dec. 27.
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The most recent data from the New York health department showed a total of 4,546 hospitalizations from Dec. 26, 2025, to Jan. 2, 2026 – a week-over-week increase of nearly 1,000. The prior week, the department announced the highest number of flu cases ever recorded in a single seven-day period.
The New York State Department of Health reported a total of 4,546 hospitalizations from Dec. 26, 2025, to Jan. 2, 2026. (iStock)
In a statement, New York’s Acting Commissioner of Health Dr. James McDonald noted the severity of this flu season compared to previous years.
“Almost 1,000 more people were admitted to a hospital during this most recent seven-day period compared to the prior week,” he confirmed. “There is still time to get a flu shot, and remember, flu can be treated with antiviral medication if started within 48 hours of symptom onset [as] your doctor deems appropriate.”
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Health officials are pushing for Americans to consider getting the flu vaccine, as experts consider it to be a top line of defense for preventing viral exposure and spread.
Flu symptoms can include fever, chills, headache, fatigue, cough, sore throat and runny nose. (iStock)
In a previous interview with Fox News Digital, Dr. Neil Maniar, professor of public health practice at Boston’s Northeastern University, emphasized that it’s not too late to get the flu vaccine, as peak season typically occurs in January.
“The vaccine still provides protection against serious illness resulting from the subclade K variant that seems to be going around,” he said.
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Even healthy individuals can become seriously ill from the flu, Maniar noted, “so a vaccine is beneficial for almost everyone.”
“Individuals typically start to develop some degree of protection within a few days and gain the full benefit within about two weeks, so now is the time for anyone who hasn’t gotten the vaccine yet.”
“The vaccine still provides protection against serious illness resulting from the subclade K variant that seems to be going around,” one doctor said. (iStock)
Flu symptoms can include fever, chills, headache, fatigue, cough, sore throat and runny nose.
A mutation of influenza A H3N2, called subclade K, has been detected as the culprit in rising global cases, causing more intense symptoms and higher risk of spread.
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“It’s becoming evident that this is a pretty severe variant of the flu,” Maniar said. “Certainly, in other parts of the world where this variant has been prevalent, it’s caused some severe illness, and we’re seeing an aggressive flu season already.”
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New York State recommends taking preventive actions to avoid flu infection. These include washing hands often; avoiding touching the eyes, nose and mouth; avoiding close contact with sick people; cleaning and disinfecting objects and surfaces; and staying home when feeling sick.
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When someone gets a cancer diagnosis, the initial reaction is usually to undergo treatment as quickly as possible — but for some types of disease, doctors may recommend a more conservative approach.
For certain cancers, immediate or aggressive treatment can cause more harm than good, according to multiple medical experts.
For example, treating slow-growing tumors with surgery, radiation or chemotherapy could create significant side effects without a survival benefit.
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“The fact that so many cancers will never kill you is not a justification for not knowing, because there is still plenty of room for ‘watchful waiting,’ as well as interventions that may improve quality of life even if they don’t extend life,” Dr. Marc Siegel, Fox News senior medical analyst, told Fox News Digital.
This is especially true as targeted cancer treatments emerge, which are more personalized and less likely to cause severe side effects, according to the doctor.
For precancerous, very early-stage breast conditions, careful monitoring may be more prudent than immediate surgery, research shows. (iStock)
“The fact that cancers are occurring earlier is a justification for heightened screenings, not the opposite,” Siegel added. “Information is power — what you do with that information is based on clinical judgment and the art of medicine.”
Below are some types of cancer that may not warrant treatment, according to research and doctors’ guidance.
No. 1: Prostate cancer (low-risk)
While some types of prostate cancer should be treated right away, others are better addressed by “watchful waiting,” according to Sanoj Punnen, M.D., a urologic oncologist with Sylvester Comprehensive Cancer Center, part of the University of Miami Health System.
“With respect to prostate cancer, for most low-risk cancers (Gleason 6 or grade group 1), we recommend initial observation and surveillance rather than immediate treatment,” he told Fox News Digital.
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The Gleason score is a grading system that ranks prostate cancer cells in terms of how abnormal they are, with 6 being the lowest grade and 10 being the highest grade (barely resembling normal cells).
“For high-grade tumors like Gleason 8, 9 or 10, we believe they progress quickly, so we recommend treatment to prevent the risk of metastasis,” said Punnen, who is also vice chair of research and a professor with the Desai Sethi Urology Institute at UHealth. “For low-risk tumors, we think they pose little risk, so we recommend just observation.”
“The fact that cancers are occurring earlier is a justification for heightened screenings, not the opposite.”
“But in the end, we can’t be sure, so our approach to observation includes serial monitoring of cancer status with PSA, MRI and occasional biopsy to ensure the tumor isn’t progressing.”
No. 2: Ductal carcinoma in situ (DCIS)
Also known as stage 0 breast cancer, DCIS is a non-invasive disease marked by abnormal cells in the lining of the breast milk ducts. The “in situ” is Latin for “in the original place,” which indicates that the cancer has not spread outside the milk ducts.
For this precancerous, very early-stage breast condition, careful monitoring may be more prudent than immediate surgery, research shows.
While some types of prostate cancer should be treated right away, others are better addressed by “watchful waiting,” according to a urologic oncologist. (iStock)
A 2024 study by the Dana-Farber Cancer Institute found that active monitoring for DCIS resulted in similar quality of life, mental health and symptom progression over a two-year period compared to a standard surgical approach.
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“These results suggest that in the short term, active monitoring is a reasonable approach to management of low-risk DCIS,” the lead researcher said in a press release. “If longer-term follow-up supports the safety of active management from a cancer outcome standpoint, this approach could be considered as an option for women with this condition.”
“But it is also critical that we understand how women feel when they are living with this ‘watch and wait’ approach and how it impacts their overall quality of life.”
Other research has suggested that women with low-risk DCIS did not have a higher rate of invasive cancer after two years of active monitoring, although each patient should discuss their individual risk level with an oncologist.
No. 3: Indolent (slow-growing) lymphomas
Non-Hodgkin lymphoma (NHL) is a type of cancer that starts in the lymphatic system, which includes the lymph nodes, spleen, thymus, bone marrow and other tissues.
Indolent lymphomas are those that “grow and spread slowly,” according to the American Cancer Society.
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The National Comprehensive Cancer Network (NCCN) recommends watchful waiting for asymptomatic, slow-growing follicular lymphoma, as a means of avoiding the toxicity of chemotherapy and immunotherapy until it’s absolutely necessary.
The Lymphoma Research Foundation confirms that doctors recommend “active surveillance” for some patients with slow-growing lymphoma.
Indolent lymphomas are those that “grow and spread slowly,” according to the American Cancer Society. (iStock)
“This approach may be started after the initial diagnosis or after relapse, depending on the situation,” the foundation states on its website. “Active treatment is started if the patient begins to develop lymphoma-related symptoms or if there are signs that the disease is progressing.”
Treatment should be started right away for aggressive (fast-growing) lymphomas.
No. 4: Chronic lymphocytic leukemia
One of the most common adult leukemias, chronic lymphocytic leukemia (CLL) originates in white blood cells (lymphocytes) in the bone marrow and then spreads to the bloodstream, according to the American Cancer Society.
CLL tends to grow slowly, with many patients experiencing no symptoms for years. Eventually, the cancer calls can spread to the lymph nodes, liver and spleen.
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Some studies have shown that early treatment for CLL does not improve survival rates compared to observation, and that the benefits may not outweigh the risks.
In a 2023 study presented at the European Hematology Association 2023 Congress in Frankfurt, Germany, researchers found that early treatment did not prolong overall survival compared to a placebo in patients with early, asymptomatic CLL.
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“I believe it’s fair to conclude that ‘watch-and-wait’ should remain the standard of care in the era of targeted drugs,” said researcher Petra Langerbeins, M.D., when presenting the findings.
No. 5: Low-grade endometrial cancer
For most patients with endometrial cancer, surgery is the first treatment, which entails removing the uterus, fallopian tubes and ovaries, according to the American Cancer Society.
However, in certain patients with low-grade cancer, such as older people, those with “frailty” and people with major health issues, doctors may recommend deferring surgery, which can pose a high risk.
The American Thyroid Association’s guidelines officially recommend active surveillance for very low-risk microcarcinomas. (iStock)
In cases where the patient has medical comorbidities or wants to preserve fertility, hormone treatment may be used instead of surgery, per the ACS.
“It’s usually also considered for cancer that is lower-grade, low-volume and slow-growing,” the above source stated.
No. 6: Some early kidney cancers
In cases of kidney cancer with small tumors (≤3 cm) or benign lesions, doctors may recommend monitoring them instead of undergoing surgery for removal.
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The American Urological Association confirms that active surveillance is an option for some small renal masses (localized tumors).
“I believe it’s fair to conclude that ‘watch-and-wait’ should remain the standard of care in the era of targeted drugs.”
Deferred treatment is particularly recommended for older patients or those with “significant comorbidities,” research shows.
“Shared decision-making about active surveillance should consider risks of intervention/competing mortality versus potential oncologic benefits of intervention,” the UAU states in its guidance.
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Data from the Delayed Intervention and Surveillance for Small Renal Masses (DISSRM) Registry showed that patients with active surveillance had a 99% or greater cancer-specific survival rate — virtually the same as patients who received immediate treatment.
No. 7: Small papillary thyroid cancers
Papillary thyroid cancer (PTC), the most common type of thyroid cancer, may not warrant treatment for small tumors measuring 1 centimeter (10 mm) or less, which are called microcarcinomas.
A young multiracial female is undergoing a diagnostic medical imaging procedure in a state-of-the-art hospital setting with CT simulator. The image illustrates the use of cutting-edge technology for healthcare and treatment in a modern medical environment. The portrayal highlights precision, care, and the sophistication of contemporary medical practices. (iStock)
Research found that when using active surveillance for 10 to 20 years, less than 10% experienced significant growth, only 5% developed lymph node spread and there were no thyroid-cancer deaths.
The American Thyroid Association’s guidelines officially recommend active surveillance for very low-risk microcarcinomas.
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While many patients with low-risk tumors can safely delay treatment, this does not apply to all cancers or all patients.
As cancer behavior and personal health factors vary widely, patients should consult their doctor to determine the most appropriate course of care based on their individual risk level.
Welcome to the Brain Health Challenge! I’m Dana Smith, a reporter at The New York Times, and I’ll be your guide.
To live a healthy life, it’s crucial to have a healthy brain. In the short term, it keeps you sharp and firing on all cylinders. In the long term, it can reduce your risk of cognitive decline, dementia and stroke.
Practicing basic healthy behaviors, like eating nutritious food and getting regular exercise, is the best way to enhance your brain power and protect the longevity of your neurons. These types of lifestyle habits can benefit the brain at any age. And while they won’t guarantee that you’ll never develop dementia or another brain disease, several clinical trials have shown that they can improve cognition or slow decline.
Every day this week, you’ll do an activity that’s good for your brain, and we’ll dig into the science behind why it works. Some of these activities can provide a small immediate cognitive benefit, but the bigger reward comes from engaging in them consistently over time. So along with the neuroscience lessons, we’ll include a few tips to help you turn these actions into lasting habits.
To keep you accountable, we’re encouraging you to complete this challenge with a friend. If you don’t have a challenge buddy, no problem: We’re also turning the comments section into one big support group.
There are so many fascinating ways your daily behaviors affect your brain. Take sleep, for example.
Lots of studies have shown that getting a good night’s rest (seven to eight hours) is associated with better memory and other cognitive abilities. That’s because sleep, especially REM sleep, is when your brain transfers short-term memories — things you learned or experienced during the day — into long-term storage.
Sleep is also when your brain does its daily housekeeping. While you rest, the brain’s glymphatic system kicks into high gear, clearing out abnormal proteins and other molecular garbage, including the protein amyloid, which is a major contributor to Alzheimer’s disease. A buildup of amyloid is one reason experts think that people who routinely get less sleep have a higher risk of dementia.
What other behaviors play a big role in brain health? For today’s activity, we’re going to test your knowledge with a quiz. Share your score with your accountability partner and in the comments below — I’ll be in there too, cheering you on.
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