{"id":13347,"date":"2022-12-09T11:44:36","date_gmt":"2022-12-09T11:44:36","guid":{"rendered":"https:\/\/ambassadornews.org\/?p=13347"},"modified":"2022-12-09T11:44:39","modified_gmt":"2022-12-09T11:44:39","slug":"what-is-stiff-person-syndrome%ef%bf%bc%ef%bf%bc","status":"publish","type":"post","link":"https:\/\/ambassadornews.org\/en\/what-is-stiff-person-syndrome%ef%bf%bc%ef%bf%bc\/","title":{"rendered":"?What is stiff-person syndrome\ufffc\ufffc"},"content":{"rendered":"

Experts say rare disorder only affects 1 or 2 people in a million, and is often not recognized<\/p>\n\n\n\n

A rare neurological disorder that affects about one or two people per million is in the spotlight in the wake of an emotional social media post by pop star C\u00e9line Dion, who described her challenges with stiff-person syndrome<\/p>\n\n\n\n

Dion, 54,\u00a0says she’s been forced to cancel shows after years of struggling with muscle spasms and other health problems related to the debilitating neurological condition<\/p>\n\n\n\n

Because of its rarity, very few experts can speak knowledgeably on the disorder<\/p>\n\n\n\n

John Hopkins Medicine,\u00a0a facility in Baltimore, Md., has a\u00a0Stiff Person Treatment Center\u00a0(new window)<\/a>. In a video explainer on the facility’s website,\u00a0Dr. Scott Newsome, a neurologist at Johns Hopkins Medicine, says the syndrome is a very rare but\u00a0devastating<\/q>\u00a0autoimmune disease. There’s no clear cause, and the disorder is still\u00a0being researched<\/p>\n\n\n\n

How does it affect people?<\/h2>\n\n\n\n

In the video, Newsome says the progressive condition shows up initially as a painful rigidity in muscles, causing spasms and imbalance. Newsome says\u00a0the syndrome often causes a rigidity in the torso, lower back, abdominal and leg areas,\u00a0affecting gait and balance<\/p>\n\n\n\n

Just walking down the street, they could have a spasm and fall,<\/q>\u00a0Newsome explains<\/p>\n\n\n\n

Sufferers are sensitive \u2014 anxiety and even loud noises can lead to an excruciating spasm, according to Dr. Marinos Dalakas, professor of neurology and director of the neuromuscular division at Thomas Jefferson University School of Medicine in Philadelphia<\/p>\n\n\n\n

He says sufferers may walk like the\u00a0tin man<\/q>\u00a0in\u00a0The Wizard of Oz<\/em>\u00a0as their muscles spasm and contract<\/p>\n\n\n\n

It is not pleasant. They walk like a statue,<\/q>\u00a0Dalakas told CBC in an interview<\/p>\n\n\n\n

He lauds Dion for speaking out about her personal struggle with the syndrome<\/p>\n\n\n\n

It’s very important because the syndrome will become more known … and so the more people understand, the more physicians know about the syndrome, the earlier the diagnosis is made, the better treatment and more treatment will happen,<\/q>\u00a0said Dalakas<\/p>\n\n\n\n

In a post\u00a0(new window)<\/a>\u00a0on the National Library of Medicine website, Texas neurologist Alexandra Muranova says\u00a0the condition\u00a0has an insidious onset with gradual worsening over time and, if left untreated, can lead to permanent disability and mortality<\/q><\/p>\n\n\n\n

Newsome said that on average, it can take about seven years to reach a diagnosis. He says there is some evidence that the syndrome is related to an imbalance of gamma-aminobutyric acid (GABA), an inhibitory neurotransmitter in the central nervous system<\/p>\n\n\n\n

GABA regulates the nervous system, so if its levels are low, he says that can create\u00a0spasticity<\/q>\u00a0or hyper-excitability in the nervous system that looks like spasms, rigidness and tightness that leads to the disability<\/p>\n\n\n\n

Sufferers often not believed<\/h2>\n\n\n\n

Newsome stresses that the disorder is not fully understood, but is believed to have a relationship to T-cells \u2014 a part of the immune system that attacks foreign particles<\/p>\n\n\n\n

We are still learning,<\/q>\u00a0said Newsome, who studies patients at his clinic to improve treatment<\/p>\n\n\n\n

He said that stiff-person syndrome affects predominantly older women. It was first described in the 1950s as stiff-man syndrome, despite the fact that the first case affected\u00a0a female<\/p>\n\n\n\n

\"Dion
Dion performs on Sept. 18, 2019, at the Videotron Centre in Quebec City. In addition to her European tour plans, she was slated to return for another Las Vegas residency.PHOTO: LA PRESSE CANADIENNE \/ JACQUES BOISSINOT<\/figcaption><\/figure>\n\n\n\n

Because it can take years to diagnose\u00a0\u2014\u00a0as some hallmark traits do not immediately appear \u2014 Newsome warned that many sufferers are not initially believed<\/p>\n\n\n\n

Treatments<\/h2>\n\n\n\n

Sufferers are treated by specialists with an expertise in the brain and muscles, along with various experimental drugs<\/p>\n\n\n\n

According to the\u00a0National Institute of Neurological Disorders and Stroke (NINDS),\u00a0patients have responded to high doses of diazepam or anti-convulsants, gabapentin and tiagabine. Some researchers have tried immunoglobulin treatment in reducing stiffness and lowering sensitivity to noise, touch\u00a0and stress<\/p>\n\n\n\n

NINDS\u00a0researches\u00a0(new window)<\/a>\u00a0the syndrome in its laboratories at the National Institutes of Health (NIH), and says current research is focused on understanding the cause of the disease and the role of certain antibodies<\/p>\n\n\n\n

CBC News<\/p>","protected":false},"excerpt":{"rendered":"

Experts say rare disorder only affects 1 or 2 people in a million, and is often not recognized A rare neurological disorder that affects about one or two people per million is in the spotlight in the wake of an emotional social media post by pop star C\u00e9line Dion, who described her challenges with stiff-person […]<\/p>\n","protected":false},"author":9,"featured_media":13348,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"_jetpack_memberships_contains_paid_content":false,"jnews-multi-image_gallery":[],"jnews_single_post":{"subtitle":"","format":"standard","video":"","gallery":"","source_name":"","source_url":"","via_name":"","via_url":"","override_template":"0","override":[{"template":"1","single_blog_custom":"","parallax":"1","fullscreen":"1","layout":"right-sidebar","sidebar":"default-sidebar","second_sidebar":"default-sidebar","sticky_sidebar":"1","share_position":"topbottom","share_float_style":"share-monocrhome","show_share_counter":"1","show_view_counter":"1","show_featured":"1","show_post_meta":"1","show_post_author":"1","show_post_author_image":"1","show_post_date":"1","post_date_format":"default","post_date_format_custom":"Y\/m\/d","show_post_category":"1","show_post_reading_time":"0","post_reading_time_wpm":"300","show_zoom_button":"0","zoom_button_out_step":"2","zoom_button_in_step":"3","show_post_tag":"1","show_prev_next_post":"1","show_popup_post":"1","number_popup_post":"1","show_author_box":"1","show_post_related":"0","show_inline_post_related":"0"}],"override_image_size":"0","image_override":[{"single_post_thumbnail_size":"crop-500","single_post_gallery_size":"crop-500"}],"trending_post":"0","trending_post_position":"meta","trending_post_label":"Trending","sponsored_post":"0","sponsored_post_label":"Sponsored 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