{"id":71888,"date":"2024-07-09T21:00:12","date_gmt":"2024-07-09T21:00:12","guid":{"rendered":"http:\/\/c18d02e41d9e32ac8f9a125f7cf90054"},"modified":"2024-07-09T21:00:12","modified_gmt":"2024-07-09T21:00:12","slug":"stiff-person-syndrome-patients-share-what-its-like-to-live-with-the-rare-disease","status":"publish","type":"post","link":"https:\/\/wp.timesamerica.net\/stiff-person-syndrome-patients-share-what-its-like-to-live-with-the-rare-disease\/","title":{"rendered":"Stiff person syndrome patients share what it\u2019s like to live with the rare disease"},"content":{"rendered":"\n<div class=\"article-gating gated-overlay\" readability=\"24.690978886756\">\n<div class=\"article-gating-wrapper\" readability=\"28.376199616123\">\n<p>Join Fox News for access to this content<\/p>\n<p>Plus special access to select articles and other premium content with your account &#8211; free of charge.<\/p>\n<div class=\"article-gating-legal tablet-desktop\" readability=\"21.43949044586\">By entering your email and pushing continue, you are agreeing to Fox News&#8217; <span class=\"waslinkname\">Terms of Use<\/span> and <span class=\"waslinkname\">Privacy Policy<\/span>, which includes our <span class=\"waslinkname\">Notice of Financial Incentive<\/span>. <\/div>\n<p><span>Please enter a valid email address.<\/span><\/p>\n<footer class=\"article-gating-footer\"><span class=\"waslinkname\">Having trouble? Click here.<\/span><\/footer>\n<\/div>\n<\/div>\n<p class=\"speakable\"><i>This story discusses suicide. If you or someone you know is having thoughts of suicide, please contact the Suicide &amp; Crisis Lifeline at 988 or 1-800-273-TALK (8255).<\/i><\/p>\n<p class=\"speakable\">A little-known neurological disorder has been thrust into the spotlight after a documentary revealed singer Celine Dion\u2019s struggle with stiff person syndrome (SPS).<\/p>\n<p>The <span class=\"waslinkname\"><u>disease is rare<\/u><\/span>, 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.<\/p>\n<p><span class=\"waslinkname\"><strong>LIKE CELINE DION, PENNSYLVANIA MAN IS FIGHTING STIFF PERSON SYNDROM WITH \u2018EVERYTHING I HAVE\u2019<\/strong><\/span><\/p>\n<p>Two people who are living with stiff person syndrome \u2014 Carrie Robinette, 45, from San Diego, California, and Corwyn Wilkey, 44, who lives in Anchorage, Alaska \u2014 shared with Fox News Digital the details of their experience.&nbsp;<\/p>\n<h2><strong>Path to diagnosis<\/strong><\/h2>\n<p>Robinette, a Navy wife and mother who was working as a full-time defense consultant, had been dealing with multiple <span class=\"waslinkname\"><u>health issues<\/u><\/span> \u2014 pain, neuropathy, fatigue, migraines, asthma, allergies, thyroid and endocrine issues, kidney issues, even cancer \u2014 for more than 15 years.<\/p>\n<p>&#8220;I was honestly \u2018always sick\u2019 from the time I was born,&#8221; she said in a phone interview with Fox News Digital.<\/p>\n<div class=\"image-ct inline\">\n<div class=\"m\"><picture><source media=\"(max-width: 767px)\" srcset=\"https:\/\/a57.foxnews.com\/static.foxnews.com\/foxnews.com\/content\/uploads\/2024\/07\/343\/192\/stiff-person-syndrome-split.jpg?ve=1&amp;tl=1, https:\/\/a57.foxnews.com\/static.foxnews.com\/foxnews.com\/content\/uploads\/2024\/07\/686\/384\/stiff-person-syndrome-split.jpg?ve=1&amp;tl=1 2x\" height=\"192\" width=\"343\"><source media=\"(min-width: 768px) and (max-width: 1023px)\" srcset=\"https:\/\/a57.foxnews.com\/static.foxnews.com\/foxnews.com\/content\/uploads\/2024\/07\/672\/378\/stiff-person-syndrome-split.jpg?ve=1&amp;tl=1, https:\/\/a57.foxnews.com\/static.foxnews.com\/foxnews.com\/content\/uploads\/2024\/07\/1344\/756\/stiff-person-syndrome-split.jpg?ve=1&amp;tl=1 2x\" height=\"378\" width=\"672\"><source media=\"(min-width: 1024px) and (max-width: 1279px)\" srcset=\"https:\/\/a57.foxnews.com\/static.foxnews.com\/foxnews.com\/content\/uploads\/2024\/07\/931\/523\/stiff-person-syndrome-split.jpg?ve=1&amp;tl=1, https:\/\/a57.foxnews.com\/static.foxnews.com\/foxnews.com\/content\/uploads\/2024\/07\/1862\/1046\/stiff-person-syndrome-split.jpg?ve=1&amp;tl=1 2x\" height=\"523\" width=\"931\"><source media=\"(min-width: 1280px)\" srcset=\"https:\/\/a57.foxnews.com\/static.foxnews.com\/foxnews.com\/content\/uploads\/2024\/07\/720\/405\/stiff-person-syndrome-split.jpg?ve=1&amp;tl=1, https:\/\/a57.foxnews.com\/static.foxnews.com\/foxnews.com\/content\/uploads\/2024\/07\/1440\/810\/stiff-person-syndrome-split.jpg?ve=1&amp;tl=1 2x\" height=\"405\" width=\"720\"><img fetchpriority=\"high\" decoding=\"async\" src=\"https:\/\/wp.timesamerica.net\/wp-content\/uploads\/2024\/07\/stiff-person-syndrome-patients-share-what-its-like-to-live-with-the-rare-disease.jpg\" alt=\"Stiff person syndrome split\" width=\"1200\" height=\"675\"><\/picture><\/div>\n<div class=\"info\" readability=\"11.5\">\n<div class=\"caption\" readability=\"18\">\n<p><span>Two people who are living with stiff person syndrome \u2014 Carrie Robinette, 45, from San Diego, California, at left, and Corwyn Wilkey, 44, who lives in Anchorage, Alaska, right \u2014 shared with Fox News Digital what their experiences have been.<\/span> <span>(Carrie Robinette\/Corwyn Wilkey)<\/span><\/p>\n<\/div>\n<\/div>\n<\/div>\n<p>&#8220;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.&#8221;<\/p>\n<p>Then, in May 2023, Robinette began experiencing painful, full-body spasms.<\/p>\n<p><span class=\"waslinkname\"><strong><u>LUPUS EXPERT DEBUNKS 7 COMMON MYTHS ABOUT THE AUTOIMMUNE DISEASE: \u2018NOT A DEATH SENTENCE\u2019<\/u><\/strong><\/span><\/p>\n<p>That kicked off a year of testing and visits to specialists in rheumatology, nephrology, endocrinology and neurology.<\/p>\n<p>&#8220;After learning more and going back through my <span class=\"waslinkname\"><u>medical history<\/u><\/span>, we realized that symptoms we previously blamed on other causes were likely early signs of stiff person syndrome.&#8221;<\/p>\n<p>Over the last year, as Robinette\u2019s &#8220;constellation of symptoms&#8221; intensified, the doctors finally narrowed it down.<\/p>\n<blockquote class=\"pull-quote\" readability=\"6\">\n<p class=\"quote-text\">&#8220;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.&#8221;<\/p>\n<p> <!----><\/p><\/blockquote>\n<p>&#8220;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,&#8221; Robinette said.<\/p>\n<p>&#8220;Definitive testing is not readily available.&#8221;<\/p>\n<div class=\"image-ct inline\">\n<div class=\"m\"><picture><source media=\"(max-width: 767px)\" srcset=\"https:\/\/a57.foxnews.com\/static.foxnews.com\/foxnews.com\/content\/uploads\/2024\/07\/343\/192\/Carrie-Robinette-receives-treatment-at-a-San-Diego-hospital.jpg?ve=1&amp;tl=1, https:\/\/a57.foxnews.com\/static.foxnews.com\/foxnews.com\/content\/uploads\/2024\/07\/686\/384\/Carrie-Robinette-receives-treatment-at-a-San-Diego-hospital.jpg?ve=1&amp;tl=1 2x\" height=\"192\" width=\"343\"><source media=\"(min-width: 768px) and (max-width: 1023px)\" srcset=\"https:\/\/a57.foxnews.com\/static.foxnews.com\/foxnews.com\/content\/uploads\/2024\/07\/672\/378\/Carrie-Robinette-receives-treatment-at-a-San-Diego-hospital.jpg?ve=1&amp;tl=1, https:\/\/a57.foxnews.com\/static.foxnews.com\/foxnews.com\/content\/uploads\/2024\/07\/1344\/756\/Carrie-Robinette-receives-treatment-at-a-San-Diego-hospital.jpg?ve=1&amp;tl=1 2x\" height=\"378\" width=\"672\"><source media=\"(min-width: 1024px) and (max-width: 1279px)\" srcset=\"https:\/\/a57.foxnews.com\/static.foxnews.com\/foxnews.com\/content\/uploads\/2024\/07\/931\/523\/Carrie-Robinette-receives-treatment-at-a-San-Diego-hospital.jpg?ve=1&amp;tl=1, https:\/\/a57.foxnews.com\/static.foxnews.com\/foxnews.com\/content\/uploads\/2024\/07\/1862\/1046\/Carrie-Robinette-receives-treatment-at-a-San-Diego-hospital.jpg?ve=1&amp;tl=1 2x\" height=\"523\" width=\"931\"><source media=\"(min-width: 1280px)\" srcset=\"https:\/\/a57.foxnews.com\/static.foxnews.com\/foxnews.com\/content\/uploads\/2024\/07\/720\/405\/Carrie-Robinette-receives-treatment-at-a-San-Diego-hospital.jpg?ve=1&amp;tl=1, https:\/\/a57.foxnews.com\/static.foxnews.com\/foxnews.com\/content\/uploads\/2024\/07\/1440\/810\/Carrie-Robinette-receives-treatment-at-a-San-Diego-hospital.jpg?ve=1&amp;tl=1 2x\" height=\"405\" width=\"720\"><img decoding=\"async\" src=\"https:\/\/wp.timesamerica.net\/wp-content\/uploads\/2024\/07\/stiff-person-syndrome-patients-share-what-its-like-to-live-with-the-rare-disease-1.jpg\" alt=\"Carrie Robinette\" width=\"1200\" height=\"675\"><\/picture><\/div>\n<div class=\"info\" readability=\"7.5\">\n<div class=\"caption\" readability=\"10\">\n<p><span>Robinette, at left, receives treatment for her stiff person syndrome at a San Diego hospital.<\/span> <span>(Carrie Robinette)<\/span><\/p>\n<\/div>\n<\/div>\n<\/div>\n<p>These days, Robinette\u2019s biggest challenge is <span class=\"waslinkname\"><u>frequent pain<\/u><\/span>.&nbsp;<\/p>\n<p>&#8220;Even if my body is not actively spasming, it feels like my muscles are sore, even bruised \u2014 all day, every day,&#8221; she said. &#8220;I think eventually, we grow accustomed to our pain, so it just becomes the new normal.&#8221;<\/p>\n<p>Some days, Robinette can walk and move &#8220;almost like normal,&#8221; while other days she can\u2019t walk without a cane or walker.<\/p>\n<p><span class=\"waslinkname\"><strong><u>THE GIRL WHO CAN\u2019T SMILE: HOW A RARE DISORDER BECAME A YOUNG WOMAN&#8217;S \u2018GREATEST GIFT\u2019<\/u><\/strong><\/span><\/p>\n<p>She regularly uses a mobility chair when traveling any distance beyond 50 feet.<\/p>\n<p>&#8220;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.&#8221;<\/p>\n<h2>&#8216;Initial symptoms&#8217;<\/h2>\n<p>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.<\/p>\n<div class=\"image-ct inline\">\n<div class=\"m\"><picture><source media=\"(max-width: 767px)\" srcset=\"https:\/\/a57.foxnews.com\/static.foxnews.com\/foxnews.com\/content\/uploads\/2024\/07\/343\/192\/As-a-musician-Corwyn-Wilkey-shares-many-similarities-with-Celine-Dion.jpg?ve=1&amp;tl=1, https:\/\/a57.foxnews.com\/static.foxnews.com\/foxnews.com\/content\/uploads\/2024\/07\/686\/384\/As-a-musician-Corwyn-Wilkey-shares-many-similarities-with-Celine-Dion.jpg?ve=1&amp;tl=1 2x\" height=\"192\" width=\"343\"><source media=\"(min-width: 768px) and (max-width: 1023px)\" srcset=\"https:\/\/a57.foxnews.com\/static.foxnews.com\/foxnews.com\/content\/uploads\/2024\/07\/672\/378\/As-a-musician-Corwyn-Wilkey-shares-many-similarities-with-Celine-Dion.jpg?ve=1&amp;tl=1, https:\/\/a57.foxnews.com\/static.foxnews.com\/foxnews.com\/content\/uploads\/2024\/07\/1344\/756\/As-a-musician-Corwyn-Wilkey-shares-many-similarities-with-Celine-Dion.jpg?ve=1&amp;tl=1 2x\" height=\"378\" width=\"672\"><source media=\"(min-width: 1024px) and (max-width: 1279px)\" srcset=\"https:\/\/a57.foxnews.com\/static.foxnews.com\/foxnews.com\/content\/uploads\/2024\/07\/931\/523\/As-a-musician-Corwyn-Wilkey-shares-many-similarities-with-Celine-Dion.jpg?ve=1&amp;tl=1, https:\/\/a57.foxnews.com\/static.foxnews.com\/foxnews.com\/content\/uploads\/2024\/07\/1862\/1046\/As-a-musician-Corwyn-Wilkey-shares-many-similarities-with-Celine-Dion.jpg?ve=1&amp;tl=1 2x\" height=\"523\" width=\"931\"><source media=\"(min-width: 1280px)\" srcset=\"https:\/\/a57.foxnews.com\/static.foxnews.com\/foxnews.com\/content\/uploads\/2024\/07\/720\/405\/As-a-musician-Corwyn-Wilkey-shares-many-similarities-with-Celine-Dion.jpg?ve=1&amp;tl=1, https:\/\/a57.foxnews.com\/static.foxnews.com\/foxnews.com\/content\/uploads\/2024\/07\/1440\/810\/As-a-musician-Corwyn-Wilkey-shares-many-similarities-with-Celine-Dion.jpg?ve=1&amp;tl=1 2x\" height=\"405\" width=\"720\"><img decoding=\"async\" src=\"https:\/\/wp.timesamerica.net\/wp-content\/uploads\/2024\/07\/stiff-person-syndrome-patients-share-what-its-like-to-live-with-the-rare-disease-2.jpg\" alt=\"Corwyn Wilkey\" width=\"1200\" height=\"675\"><\/picture><\/div>\n<div class=\"info\" readability=\"8\">\n<div class=\"caption\" readability=\"11\">\n<p><span>As a musician, Corwyn Wilkey said his symptoms share some similarities to Celine Dion&#8217;s. &#8220;My initial symptoms were throat and facial spasms that have progressed into full-body seizures,&#8221; he told Fox News Digital.&nbsp;<\/span> <span>(Corwyn Wilkey)<\/span><\/p>\n<\/div>\n<\/div>\n<\/div>\n<p>&#8220;Like <span class=\"waslinkname\"><u>Celine Dion<\/u><\/span>, my initial symptoms were throat and facial spasms that have progressed into full-body seizures,&#8221; he told Fox News Digital via email.&nbsp;<\/p>\n<p>Wilkey was officially diagnosed with stiff person syndrome in 2021 at the Mayo Clinic in Rochester, Minnesota.<\/p>\n<p><span class=\"waslinkname\"><strong><u>PENNSYLVANIA MOM SEEKS \u2018PERFECT MATCH\u2019 BONE MARROW DONOR TO CURE DAUGHTER\u2019S RARE DISORDER: \u2018CRUCIAL NEED\u2019<\/u><\/strong><\/span><\/p>\n<p>&#8220;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, <span class=\"waslinkname\"><u>back pain<\/u><\/span>, and inability to coordinate my body the way I want to,&#8221; he said.<\/p>\n<p>Wilkey\u2019s full-body spasms are sometimes strong enough to dislocate and even fracture bones, he said.&nbsp;<\/p>\n<p>James Chung, M.D., PhD, chief medical officer at Kyverna Therapeutics in <span class=\"waslinkname\"><u>Emeryville, California<\/u><\/span>, noted that diagnosis of stiff person syndrome is a complex process. (He has not treated either of the patients mentioned in this article.)<\/p>\n<div class=\"image-ct inline\">\n<div class=\"m\"><picture><source media=\"(max-width: 767px)\" srcset=\"https:\/\/a57.foxnews.com\/static.foxnews.com\/foxnews.com\/content\/uploads\/2024\/07\/343\/192\/James-Chung-Headshot.jpg?ve=1&amp;tl=1, https:\/\/a57.foxnews.com\/static.foxnews.com\/foxnews.com\/content\/uploads\/2024\/07\/686\/384\/James-Chung-Headshot.jpg?ve=1&amp;tl=1 2x\" height=\"192\" width=\"343\"><source media=\"(min-width: 768px) and (max-width: 1023px)\" srcset=\"https:\/\/a57.foxnews.com\/static.foxnews.com\/foxnews.com\/content\/uploads\/2024\/07\/672\/378\/James-Chung-Headshot.jpg?ve=1&amp;tl=1, https:\/\/a57.foxnews.com\/static.foxnews.com\/foxnews.com\/content\/uploads\/2024\/07\/1344\/756\/James-Chung-Headshot.jpg?ve=1&amp;tl=1 2x\" height=\"378\" width=\"672\"><source media=\"(min-width: 1024px) and (max-width: 1279px)\" srcset=\"https:\/\/a57.foxnews.com\/static.foxnews.com\/foxnews.com\/content\/uploads\/2024\/07\/931\/523\/James-Chung-Headshot.jpg?ve=1&amp;tl=1, https:\/\/a57.foxnews.com\/static.foxnews.com\/foxnews.com\/content\/uploads\/2024\/07\/1862\/1046\/James-Chung-Headshot.jpg?ve=1&amp;tl=1 2x\" height=\"523\" width=\"931\"><source media=\"(min-width: 1280px)\" srcset=\"https:\/\/a57.foxnews.com\/static.foxnews.com\/foxnews.com\/content\/uploads\/2024\/07\/720\/405\/James-Chung-Headshot.jpg?ve=1&amp;tl=1, https:\/\/a57.foxnews.com\/static.foxnews.com\/foxnews.com\/content\/uploads\/2024\/07\/1440\/810\/James-Chung-Headshot.jpg?ve=1&amp;tl=1 2x\" height=\"405\" width=\"720\"><img loading=\"lazy\" decoding=\"async\" src=\"https:\/\/wp.timesamerica.net\/wp-content\/uploads\/2024\/07\/stiff-person-syndrome-patients-share-what-its-like-to-live-with-the-rare-disease-3.jpg\" alt=\"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.\" width=\"1200\" height=\"675\"><\/picture><\/div>\n<div class=\"info\" readability=\"9\">\n<div class=\"caption\" readability=\"13\">\n<p><span>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.<\/span> <span>(Dr. James Chung)<\/span><\/p>\n<\/div>\n<\/div>\n<\/div>\n<p>&#8220;We start with a detailed clinical evaluation, looking for characteristic muscle rigidity and spasms,&#8221; Chung, who focuses on drug development for autoimmune diseases, told Fox News Digital via email.&nbsp;<\/p>\n<p><span class=\"waslinkname\"><strong><u>FDA APPROVES NEW DRUG TO TREAT AUTOIMMUNE LIVER DISEASE: \u2018GIANT STEP FORWARD\u2019<\/u><\/strong><\/span><\/p>\n<p>Blood tests are also needed to detect the antibodies that are found in a majority of cases, he said.<\/p>\n<blockquote class=\"pull-quote\" readability=\"7\">\n<p class=\"quote-text\">&#8220;Given the rarity of SPS, patients often feel misunderstood, even by health care professionals.&#8221;<\/p>\n<p> <!----><\/p><\/blockquote>\n<p>&#8220;Electromyography (EMG) is essential, showing continuous motor unit activity in affected muscles,&#8221; he said.<\/p>\n<p>In many cases, doctors will perform a lumbar puncture (spinal tap) to analyze cerebrospinal fluid for elevated antibodies and to rule out other conditions, <span class=\"waslinkname\">along with imaging scans<\/span>.&nbsp;<\/p>\n<p>&#8220;SPS is often a diagnosis of exclusion due to its rarity,&#8221; Chung said.<\/p>\n<h2>Limited treatments<\/h2>\n<p>While there is currently no cure for stiff person syndrome, therapies can help manage symptoms and improve patients\u2019 quality of life.<\/p>\n<p>Treatments are highly personalized for each patient, according to Chung.<\/p>\n<div class=\"image-ct inline\">\n<div class=\"m\"><picture><source media=\"(max-width: 767px)\" srcset=\"https:\/\/a57.foxnews.com\/static.foxnews.com\/foxnews.com\/content\/uploads\/2024\/07\/343\/192\/Carrie-Robinette-shows-what-her-life-looks-like-with-SPS-scaled.jpg?ve=1&amp;tl=1, https:\/\/a57.foxnews.com\/static.foxnews.com\/foxnews.com\/content\/uploads\/2024\/07\/686\/384\/Carrie-Robinette-shows-what-her-life-looks-like-with-SPS-scaled.jpg?ve=1&amp;tl=1 2x\" height=\"192\" width=\"343\"><source media=\"(min-width: 768px) and (max-width: 1023px)\" srcset=\"https:\/\/a57.foxnews.com\/static.foxnews.com\/foxnews.com\/content\/uploads\/2024\/07\/672\/378\/Carrie-Robinette-shows-what-her-life-looks-like-with-SPS-scaled.jpg?ve=1&amp;tl=1, https:\/\/a57.foxnews.com\/static.foxnews.com\/foxnews.com\/content\/uploads\/2024\/07\/1344\/756\/Carrie-Robinette-shows-what-her-life-looks-like-with-SPS-scaled.jpg?ve=1&amp;tl=1 2x\" height=\"378\" width=\"672\"><source media=\"(min-width: 1024px) and (max-width: 1279px)\" srcset=\"https:\/\/a57.foxnews.com\/static.foxnews.com\/foxnews.com\/content\/uploads\/2024\/07\/931\/523\/Carrie-Robinette-shows-what-her-life-looks-like-with-SPS-scaled.jpg?ve=1&amp;tl=1, https:\/\/a57.foxnews.com\/static.foxnews.com\/foxnews.com\/content\/uploads\/2024\/07\/1862\/1046\/Carrie-Robinette-shows-what-her-life-looks-like-with-SPS-scaled.jpg?ve=1&amp;tl=1 2x\" height=\"523\" width=\"931\"><source media=\"(min-width: 1280px)\" srcset=\"https:\/\/a57.foxnews.com\/static.foxnews.com\/foxnews.com\/content\/uploads\/2024\/07\/720\/405\/Carrie-Robinette-shows-what-her-life-looks-like-with-SPS-scaled.jpg?ve=1&amp;tl=1, https:\/\/a57.foxnews.com\/static.foxnews.com\/foxnews.com\/content\/uploads\/2024\/07\/1440\/810\/Carrie-Robinette-shows-what-her-life-looks-like-with-SPS-scaled.jpg?ve=1&amp;tl=1 2x\" height=\"405\" width=\"720\"><img loading=\"lazy\" decoding=\"async\" src=\"https:\/\/wp.timesamerica.net\/wp-content\/uploads\/2024\/07\/stiff-person-syndrome-patients-share-what-its-like-to-live-with-the-rare-disease-4.jpg\" alt=\"Carrie Robinette\" width=\"1200\" height=\"675\"><\/picture><\/div>\n<div class=\"info\" readability=\"7.5\">\n<div class=\"caption\" readability=\"10\">\n<p><span>Robinette shows what her life looks like with SPS. &#8220;For now, unfortunately, I am currently battling my condition without any helpful medications.&#8221;<\/span> <span>(Carrie Robinette)<\/span><\/p>\n<\/div>\n<\/div>\n<\/div>\n<p>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.&nbsp;<\/p>\n<p>&#8220;Pain management often involves a <span class=\"waslinkname\"><u>combination of medications<\/u><\/span>,&#8221; Chung said. &#8220;Physical and occupational therapy are vital.&#8221;<\/p>\n<p>Some current medications can have intense side effects, however.<\/p>\n<p><span class=\"waslinkname\"><strong><u>RARE CONDITION CAUSED PATIENT TO SEE \u2018DEMONIC\u2019 FACES, SAYS STUDY ON \u2018VISUAL DISORDER\u2019<\/u><\/strong><\/span><\/p>\n<p>Robinette has experienced hallucinations, loss of muscle control, nausea, vomiting and brain fog.<\/p>\n<p>&#8220;For now, unfortunately, I am currently battling my condition without any helpful medications, and it is nearly unbearable,&#8221; she said.<\/p>\n<p>Kyverna Therapeutics is currently developing a new CAR-T cell therapy, KYV-101, that aims to &#8220;reset&#8221; the immune systems of patients with autoimmune diseases, according to Chung.<\/p>\n<div class=\"image-ct inline\">\n<div class=\"m\"><picture><source media=\"(max-width: 767px)\" srcset=\"https:\/\/a57.foxnews.com\/static.foxnews.com\/foxnews.com\/content\/uploads\/2024\/07\/343\/192\/Corwyn-Wilkey-poses-with-his-family-in-Alaska-scaled.jpg?ve=1&amp;tl=1, https:\/\/a57.foxnews.com\/static.foxnews.com\/foxnews.com\/content\/uploads\/2024\/07\/686\/384\/Corwyn-Wilkey-poses-with-his-family-in-Alaska-scaled.jpg?ve=1&amp;tl=1 2x\" height=\"192\" width=\"343\"><source media=\"(min-width: 768px) and (max-width: 1023px)\" srcset=\"https:\/\/a57.foxnews.com\/static.foxnews.com\/foxnews.com\/content\/uploads\/2024\/07\/672\/378\/Corwyn-Wilkey-poses-with-his-family-in-Alaska-scaled.jpg?ve=1&amp;tl=1, https:\/\/a57.foxnews.com\/static.foxnews.com\/foxnews.com\/content\/uploads\/2024\/07\/1344\/756\/Corwyn-Wilkey-poses-with-his-family-in-Alaska-scaled.jpg?ve=1&amp;tl=1 2x\" height=\"378\" width=\"672\"><source media=\"(min-width: 1024px) and (max-width: 1279px)\" srcset=\"https:\/\/a57.foxnews.com\/static.foxnews.com\/foxnews.com\/content\/uploads\/2024\/07\/931\/523\/Corwyn-Wilkey-poses-with-his-family-in-Alaska-scaled.jpg?ve=1&amp;tl=1, https:\/\/a57.foxnews.com\/static.foxnews.com\/foxnews.com\/content\/uploads\/2024\/07\/1862\/1046\/Corwyn-Wilkey-poses-with-his-family-in-Alaska-scaled.jpg?ve=1&amp;tl=1 2x\" height=\"523\" width=\"931\"><source media=\"(min-width: 1280px)\" srcset=\"https:\/\/a57.foxnews.com\/static.foxnews.com\/foxnews.com\/content\/uploads\/2024\/07\/720\/405\/Corwyn-Wilkey-poses-with-his-family-in-Alaska-scaled.jpg?ve=1&amp;tl=1, https:\/\/a57.foxnews.com\/static.foxnews.com\/foxnews.com\/content\/uploads\/2024\/07\/1440\/810\/Corwyn-Wilkey-poses-with-his-family-in-Alaska-scaled.jpg?ve=1&amp;tl=1 2x\" height=\"405\" width=\"720\"><img loading=\"lazy\" decoding=\"async\" src=\"https:\/\/wp.timesamerica.net\/wp-content\/uploads\/2024\/07\/stiff-person-syndrome-patients-share-what-its-like-to-live-with-the-rare-disease-5.jpg\" alt=\"Corwyn Wilkey\" width=\"1200\" height=\"675\"><\/picture><\/div>\n<div class=\"info\" readability=\"9\">\n<div class=\"caption\" readability=\"13\">\n<p><span>Wilkey, pictured with his children, endured a dark time after his diagnosis. &#8220;I lost everything \u2014 my marriage, all my money, my home and even my children for a time,&#8221; he said.&nbsp;<\/span> <span>(Corwyn Wilkey)<\/span><\/p>\n<\/div>\n<\/div>\n<\/div>\n<p>&#8220;This approach could potentially offer a more targeted treatment that addresses the root cause of SPS rather than just managing symptoms,&#8221; he said.<\/p>\n<p>The drug has recently gotten FDA approval to enter phase 2 clinical trials.<\/p>\n<p>&#8220;I can really see it being the life-changing treatment that so many people with SPS and other autoimmune conditions need,&#8221; said Robinette. &#8220;I just wish <span class=\"waslinkname\"><u>science moved faster<\/u><\/span>!&#8221;<\/p>\n<h2><strong>Mental and emotional effects<\/strong><\/h2>\n<p>Many patients with stiff person syndrome struggle with anxiety about experiencing spasms in public, which often leads to social isolation, according to Chung.&nbsp;<\/p>\n<p><span class=\"waslinkname\">&#8220;Depression is common<\/span>, stemming from chronic pain, loss of independence and the disease&#8217;s unpredictable nature,&#8221; he told Fox News Digital.<\/p>\n<p><span class=\"waslinkname\"><strong><u>NEW JERSEY TWINS RECEIVE MATCHING HEART SURGERIES AFTER MARFAN SYNDROME DIAGNOSIS: &#8216;A BETTER LIFE&#8217;<\/u><\/strong><\/span><\/p>\n<p>&#8220;Patients also frequently experience frustration with the medical system due to misdiagnosis or dismissal of symptoms,&#8221; he added.<\/p>\n<p>&#8220;Given the rarity of SPS, patients often feel misunderstood, even by health care professionals.&#8221;<\/p>\n<p>When Wilkey received his diagnosis, he struggled with treatment-resistant depression, PTSD and complex regional pain syndrome, he told Fox News Digital.<\/p>\n<div class=\"image-ct inline\">\n<div class=\"m\"><picture><source media=\"(max-width: 767px)\" srcset=\"https:\/\/a57.foxnews.com\/static.foxnews.com\/foxnews.com\/content\/uploads\/2024\/07\/343\/192\/Carrie-Robinette-recovers-in-the-hospital-as-she-worked-to-get-her-SPS-diagnosis-scaled.jpg?ve=1&amp;tl=1, https:\/\/a57.foxnews.com\/static.foxnews.com\/foxnews.com\/content\/uploads\/2024\/07\/686\/384\/Carrie-Robinette-recovers-in-the-hospital-as-she-worked-to-get-her-SPS-diagnosis-scaled.jpg?ve=1&amp;tl=1 2x\" height=\"192\" width=\"343\"><source media=\"(min-width: 768px) and (max-width: 1023px)\" srcset=\"https:\/\/a57.foxnews.com\/static.foxnews.com\/foxnews.com\/content\/uploads\/2024\/07\/672\/378\/Carrie-Robinette-recovers-in-the-hospital-as-she-worked-to-get-her-SPS-diagnosis-scaled.jpg?ve=1&amp;tl=1, https:\/\/a57.foxnews.com\/static.foxnews.com\/foxnews.com\/content\/uploads\/2024\/07\/1344\/756\/Carrie-Robinette-recovers-in-the-hospital-as-she-worked-to-get-her-SPS-diagnosis-scaled.jpg?ve=1&amp;tl=1 2x\" height=\"378\" width=\"672\"><source media=\"(min-width: 1024px) and (max-width: 1279px)\" srcset=\"https:\/\/a57.foxnews.com\/static.foxnews.com\/foxnews.com\/content\/uploads\/2024\/07\/931\/523\/Carrie-Robinette-recovers-in-the-hospital-as-she-worked-to-get-her-SPS-diagnosis-scaled.jpg?ve=1&amp;tl=1, https:\/\/a57.foxnews.com\/static.foxnews.com\/foxnews.com\/content\/uploads\/2024\/07\/1862\/1046\/Carrie-Robinette-recovers-in-the-hospital-as-she-worked-to-get-her-SPS-diagnosis-scaled.jpg?ve=1&amp;tl=1 2x\" height=\"523\" width=\"931\"><source media=\"(min-width: 1280px)\" srcset=\"https:\/\/a57.foxnews.com\/static.foxnews.com\/foxnews.com\/content\/uploads\/2024\/07\/720\/405\/Carrie-Robinette-recovers-in-the-hospital-as-she-worked-to-get-her-SPS-diagnosis-scaled.jpg?ve=1&amp;tl=1, https:\/\/a57.foxnews.com\/static.foxnews.com\/foxnews.com\/content\/uploads\/2024\/07\/1440\/810\/Carrie-Robinette-recovers-in-the-hospital-as-she-worked-to-get-her-SPS-diagnosis-scaled.jpg?ve=1&amp;tl=1 2x\" height=\"405\" width=\"720\"><img loading=\"lazy\" decoding=\"async\" src=\"https:\/\/wp.timesamerica.net\/wp-content\/uploads\/2024\/07\/stiff-person-syndrome-patients-share-what-its-like-to-live-with-the-rare-disease-6.jpg\" alt=\"Carrie Robinette\" width=\"1200\" height=\"675\"><\/picture><\/div>\n<div class=\"info\" readability=\"8\">\n<div class=\"caption\" readability=\"11\">\n<p><span>&#8220;This past year, on my journey with SPS, my family and I have really been put through the wringer,&#8221; Robinette told Fox News Digital.<\/span> <span>(Carrie Robinette)<\/span><\/p>\n<\/div>\n<\/div>\n<\/div>\n<p>&#8220;The difficulties associated with the disease destroyed my marriage and, for a time, turned me into a rage monster,&#8221; he said.&nbsp;<\/p>\n<p>&#8220;It has felt very much like receiving a death sentence.&#8221;<\/p>\n<p>To treat his &#8220;incredible&#8221; pain, Wilkey was prescribed oxycodone and morphine, which ultimately <span class=\"waslinkname\"><u>led to addiction<\/u><\/span>.<\/p>\n<p><span class=\"waslinkname\"><strong><u>OHIO BOY, 8, PREPARES FOR BLINDNESS: \u2018IT\u2019S HEARTBREAKING,\u2019 HIS MOM SAYS<\/u><\/strong><\/span><\/p>\n<p>&#8220;I became unable to function and felt like a burden on my family, which led me to attempt suicide,&#8221; he said.<\/p>\n<p>Wilkey underwent a period of hospitalization, intensive therapy and pain rehabilitation programs.<\/p>\n<p>&#8220;I lost everything \u2014 my marriage, all my money, my home and <span class=\"waslinkname\">even my children<\/span> for a time,&#8221; he said.&nbsp;<\/p>\n<div class=\"image-ct inline\">\n<div class=\"m\"><picture><source media=\"(max-width: 767px)\" srcset=\"https:\/\/a57.foxnews.com\/static.foxnews.com\/foxnews.com\/content\/uploads\/2024\/07\/343\/192\/Corwyn-Wilkey-shows-what-his-life-is-like-living-with-SPS.jpg?ve=1&amp;tl=1, https:\/\/a57.foxnews.com\/static.foxnews.com\/foxnews.com\/content\/uploads\/2024\/07\/686\/384\/Corwyn-Wilkey-shows-what-his-life-is-like-living-with-SPS.jpg?ve=1&amp;tl=1 2x\" height=\"192\" width=\"343\"><source media=\"(min-width: 768px) and (max-width: 1023px)\" srcset=\"https:\/\/a57.foxnews.com\/static.foxnews.com\/foxnews.com\/content\/uploads\/2024\/07\/672\/378\/Corwyn-Wilkey-shows-what-his-life-is-like-living-with-SPS.jpg?ve=1&amp;tl=1, https:\/\/a57.foxnews.com\/static.foxnews.com\/foxnews.com\/content\/uploads\/2024\/07\/1344\/756\/Corwyn-Wilkey-shows-what-his-life-is-like-living-with-SPS.jpg?ve=1&amp;tl=1 2x\" height=\"378\" width=\"672\"><source media=\"(min-width: 1024px) and (max-width: 1279px)\" srcset=\"https:\/\/a57.foxnews.com\/static.foxnews.com\/foxnews.com\/content\/uploads\/2024\/07\/931\/523\/Corwyn-Wilkey-shows-what-his-life-is-like-living-with-SPS.jpg?ve=1&amp;tl=1, https:\/\/a57.foxnews.com\/static.foxnews.com\/foxnews.com\/content\/uploads\/2024\/07\/1862\/1046\/Corwyn-Wilkey-shows-what-his-life-is-like-living-with-SPS.jpg?ve=1&amp;tl=1 2x\" height=\"523\" width=\"931\"><source media=\"(min-width: 1280px)\" srcset=\"https:\/\/a57.foxnews.com\/static.foxnews.com\/foxnews.com\/content\/uploads\/2024\/07\/720\/405\/Corwyn-Wilkey-shows-what-his-life-is-like-living-with-SPS.jpg?ve=1&amp;tl=1, https:\/\/a57.foxnews.com\/static.foxnews.com\/foxnews.com\/content\/uploads\/2024\/07\/1440\/810\/Corwyn-Wilkey-shows-what-his-life-is-like-living-with-SPS.jpg?ve=1&amp;tl=1 2x\" height=\"405\" width=\"720\"><img loading=\"lazy\" decoding=\"async\" src=\"https:\/\/wp.timesamerica.net\/wp-content\/uploads\/2024\/07\/stiff-person-syndrome-patients-share-what-its-like-to-live-with-the-rare-disease-7.jpg\" alt=\"Corwyn Wilkey\" width=\"1200\" height=\"675\"><\/picture><\/div>\n<div class=\"info\" readability=\"7.5\">\n<div class=\"caption\" readability=\"10\">\n<p><span>Today, Wilkey continues to participate in palliative care therapy, as well as psychedelic-assisted therapy for PTSD and depression.<\/span> <span>(Corwyn Wilkey)<\/span><\/p>\n<\/div>\n<\/div>\n<\/div>\n<p>Today, Wilkey continues to participate in palliative care therapy \u2014 as SPS is considered a progressive and terminal disease \u2014 as well as psychedelic-assisted therapy for <span class=\"waslinkname\"><u>PTSD and depression<\/u><\/span>.<\/p>\n<p>Robinette has also experienced mental and emotional challenges stemming from her disease.<\/p>\n<p>&#8220;This past year, on my journey with SPS, my family and I have really been put through the wringer,&#8221; she told Fox News Digital.<\/p>\n<blockquote class=\"pull-quote\" readability=\"7\">\n<p class=\"quote-text\">&#8220;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.&#8221;<\/p>\n<p> <!----><\/p><\/blockquote>\n<p>&#8220;Seizing, in 10 out of 10 pain, losing control of muscles, and having the body twist and contort into a terrifying, seemingly endless episode \u2014 some of these events last 10 to 60 minutes, which feels like an eternity.&#8221;<\/p>\n<p>The hardest part, she said, is that some doctors have told her, &#8220;It could be in your head,&#8221; or &#8220;We can&#8217;t help you because we aren&#8217;t sure what it is.&#8221;<\/p>\n<p>&#8220;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,&#8221; Robinette said.&nbsp;<\/p>\n<div class=\"image-ct inline\">\n<div class=\"m\"><picture><source media=\"(max-width: 767px)\" srcset=\"https:\/\/a57.foxnews.com\/static.foxnews.com\/foxnews.com\/content\/uploads\/2024\/02\/343\/192\/096ffe37-celine-dion-grammys.jpg?ve=1&amp;tl=1, https:\/\/a57.foxnews.com\/static.foxnews.com\/foxnews.com\/content\/uploads\/2024\/02\/686\/384\/096ffe37-celine-dion-grammys.jpg?ve=1&amp;tl=1 2x\" height=\"192\" width=\"343\"><source media=\"(min-width: 768px) and (max-width: 1023px)\" srcset=\"https:\/\/a57.foxnews.com\/static.foxnews.com\/foxnews.com\/content\/uploads\/2024\/02\/672\/378\/096ffe37-celine-dion-grammys.jpg?ve=1&amp;tl=1, https:\/\/a57.foxnews.com\/static.foxnews.com\/foxnews.com\/content\/uploads\/2024\/02\/1344\/756\/096ffe37-celine-dion-grammys.jpg?ve=1&amp;tl=1 2x\" height=\"378\" width=\"672\"><source media=\"(min-width: 1024px) and (max-width: 1279px)\" srcset=\"https:\/\/a57.foxnews.com\/static.foxnews.com\/foxnews.com\/content\/uploads\/2024\/02\/931\/523\/096ffe37-celine-dion-grammys.jpg?ve=1&amp;tl=1, https:\/\/a57.foxnews.com\/static.foxnews.com\/foxnews.com\/content\/uploads\/2024\/02\/1862\/1046\/096ffe37-celine-dion-grammys.jpg?ve=1&amp;tl=1 2x\" height=\"523\" width=\"931\"><source media=\"(min-width: 1280px)\" srcset=\"https:\/\/a57.foxnews.com\/static.foxnews.com\/foxnews.com\/content\/uploads\/2024\/02\/720\/405\/096ffe37-celine-dion-grammys.jpg?ve=1&amp;tl=1, https:\/\/a57.foxnews.com\/static.foxnews.com\/foxnews.com\/content\/uploads\/2024\/02\/1440\/810\/096ffe37-celine-dion-grammys.jpg?ve=1&amp;tl=1 2x\" height=\"405\" width=\"720\"><img loading=\"lazy\" decoding=\"async\" src=\"https:\/\/wp.timesamerica.net\/wp-content\/uploads\/2024\/07\/stiff-person-syndrome-patients-share-what-its-like-to-live-with-the-rare-disease-8.jpg\" alt=\"Celine Dion at the Grammys\" width=\"1200\" height=\"675\"><\/picture><\/div>\n<div class=\"info\" readability=\"6.5\">\n<div class=\"caption\" readability=\"8\">\n<p><span>Celine Dion was diagnosed with stiff person syndrome in 2022.<\/span> <span>(Neilson Barnard\/Getty Images for The Recording Academy)<\/span><\/p>\n<\/div>\n<\/div>\n<\/div>\n<p>&#8220;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.&#8221;<\/p>\n<p><span class=\"waslinkname\"><u>Stress management<\/u><\/span> is crucial for SPS patients, Chung said, as emotional stress can trigger or worsen spasms.&nbsp;<\/p>\n<p>&#8220;Supporting mental health is a key component of comprehensive SPS care.&#8221;<\/p>\n<h2><strong>Who is most at risk?<\/strong><\/h2>\n<p>Stiff person syndrome is a progressive and ultimately terminal neuromuscular autoimmune disease.<\/p>\n<p>SPS shows certain demographic patterns, Chung said.&nbsp;<\/p>\n<blockquote class=\"pull-quote\" readability=\"5\">\n<p class=\"quote-text\">&#8220;It is incredibly empowering to know that you are not alone.&#8221;<\/p>\n<p> <!----><\/p><\/blockquote>\n<p>&#8220;Women are more commonly affected, with a 2:1 ratio compared to men,&#8221; he said.<\/p>\n<p>The typical age of diagnosis is between 30 and 60 years of age.&nbsp;<\/p>\n<p>&#8220;There&#8217;s a strong association with other autoimmune disorders,&#8221; Chung said, which can complicate the diagnosis process.&nbsp;<\/p>\n<p><span class=\"waslinkname\"><strong><u>CLICK HERE TO GET THE FOX NEWS APP<\/u><\/strong><\/span><strong>&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;&nbsp;<\/strong><\/p>\n<p>&#8220;About 30% to 40% of SPS patients have <span class=\"waslinkname\"><u>type 1 diabetes<\/u><\/span>, and we see higher rates of thyroiditis, vitiligo and pernicious anemia,&#8221; the doctor went on.<\/p>\n<p>&#8220;This clustering suggests a genetic predisposition to autoimmunity, although we haven&#8217;t identified specific genes for SPS.&#8221;<\/p>\n<h2><strong>Advice for handling a diagnosis<\/strong><\/h2>\n<p>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.<\/p>\n<p>&#8220;Work closely with a multidisciplinary <span class=\"waslinkname\"><u>medical team<\/u><\/span>, be proactive in your treatment and communicate openly with your health care providers,&#8221; he advised.<\/p>\n<p><span class=\"waslinkname\"><strong><u>CLICK HERE TO SIGN UP FOR OUR HEALTH NEWSLETTER<\/u><\/strong><\/span><\/p>\n<p>The doctor also recommended practicing stress-reduction techniques and staying as physically active as safely possible under professional guidance.<\/p>\n<div class=\"image-ct inline\">\n<div class=\"m\"><picture><source media=\"(max-width: 767px)\" srcset=\"https:\/\/a57.foxnews.com\/static.foxnews.com\/foxnews.com\/content\/uploads\/2024\/07\/343\/192\/carrie-robinette-and-husband.jpg?ve=1&amp;tl=1, https:\/\/a57.foxnews.com\/static.foxnews.com\/foxnews.com\/content\/uploads\/2024\/07\/686\/384\/carrie-robinette-and-husband.jpg?ve=1&amp;tl=1 2x\" height=\"192\" width=\"343\"><source media=\"(min-width: 768px) and (max-width: 1023px)\" srcset=\"https:\/\/a57.foxnews.com\/static.foxnews.com\/foxnews.com\/content\/uploads\/2024\/07\/672\/378\/carrie-robinette-and-husband.jpg?ve=1&amp;tl=1, https:\/\/a57.foxnews.com\/static.foxnews.com\/foxnews.com\/content\/uploads\/2024\/07\/1344\/756\/carrie-robinette-and-husband.jpg?ve=1&amp;tl=1 2x\" height=\"378\" width=\"672\"><source media=\"(min-width: 1024px) and (max-width: 1279px)\" srcset=\"https:\/\/a57.foxnews.com\/static.foxnews.com\/foxnews.com\/content\/uploads\/2024\/07\/931\/523\/carrie-robinette-and-husband.jpg?ve=1&amp;tl=1, https:\/\/a57.foxnews.com\/static.foxnews.com\/foxnews.com\/content\/uploads\/2024\/07\/1862\/1046\/carrie-robinette-and-husband.jpg?ve=1&amp;tl=1 2x\" height=\"523\" width=\"931\"><source media=\"(min-width: 1280px)\" srcset=\"https:\/\/a57.foxnews.com\/static.foxnews.com\/foxnews.com\/content\/uploads\/2024\/07\/720\/405\/carrie-robinette-and-husband.jpg?ve=1&amp;tl=1, https:\/\/a57.foxnews.com\/static.foxnews.com\/foxnews.com\/content\/uploads\/2024\/07\/1440\/810\/carrie-robinette-and-husband.jpg?ve=1&amp;tl=1 2x\" height=\"405\" width=\"720\"><img loading=\"lazy\" decoding=\"async\" src=\"https:\/\/wp.timesamerica.net\/wp-content\/uploads\/2024\/07\/stiff-person-syndrome-patients-share-what-its-like-to-live-with-the-rare-disease-9.jpg\" alt=\"Carrie Robinette\" width=\"1200\" height=\"675\"><\/picture><\/div>\n<div class=\"info\" readability=\"9\">\n<div class=\"caption\" readability=\"13\">\n<p><span>Robinette is pictured with her husband, Jared Robinette, who she said has given her &#8220;incredible support&#8221; throughout her struggle with stiff person syndrome. &#8220;He has been at my side through every terrifying episode,&#8221; she said. &#8220;He has gone above and beyond caring for me. I am truly lucky to have such a kind and thoughtful partner.&#8221;<\/span> <span>(Carrie Robinette)<\/span><\/p>\n<\/div>\n<\/div>\n<\/div>\n<p>Wilkey\u2019s best advice: &#8220;Don&#8217;t try and go it alone.&#8221;<\/p>\n<p>He said, &#8220;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.&#8221;<\/p>\n<p>For Robinette, sharing her story has been a helpful coping mechanism.<\/p>\n<p>&#8220;It is incredibly empowering to know that you are not alone,&#8221; she said.<\/p>\n<p><span class=\"waslinkname\"><i><strong><u>For more Health articles, visit <\/u><\/strong><\/i><\/span><span class=\"waslinkname\"><i><strong><u>www.foxnews\/health<\/u><\/strong><\/i><\/span><i><strong>&nbsp;<\/strong><\/i><\/p>\n<p>&#8220;I believe that the more our voices rise, the more chance we all have of being heard.&#8221;<\/p>\n<p>Those seeking more information and resources for stiff person syndrome can visit The Stiff Person Syndrome Research Foundation at<i><strong> <\/strong><\/i>www.stiffperson.org.<\/p>\n","protected":false},"excerpt":{"rendered":"<p>Join Fox News for access to this content Plus special access to select articles and other premium content with your account &#8211; free of charge. By entering your email and pushing continue, you are agreeing to Fox News&#8217; Terms of Use and Privacy Policy, which includes our Notice of Financial Incentive. 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