	{"id":80848,"date":"2022-02-05T04:58:16","date_gmt":"2022-02-04T17:58:16","guid":{"rendered":"https:\/\/timesnewsgroup.com.au\/bendigotimes\/?p=80848"},"modified":"2022-02-27T10:59:36","modified_gmt":"2022-02-26T23:59:36","slug":"raising-awareness-of-a-rare-condition","status":"publish","type":"post","link":"https:\/\/timesnewsgroup.com.au\/bendigotimes\/news\/raising-awareness-of-a-rare-condition\/","title":{"rendered":"Raising awareness of a rare condition"},"content":{"rendered":"<p>WHEN talking becomes especially difficult for Coral Hunt, she finds solace in being around her pets.<\/p>\n<p>\u201cI love being with my animals, that\u2019s where I find my peace and calm,\u201d she said. \u201cI think people can learn a lot from animals because they\u2019re very accepting and non-judgmental.\u201d<\/p>\n<p>Ms Hunt has spasmodic dysphonia, a rare neurological voice condition that affects just one in 100,000 people globally.<\/p>\n<p>Muscle spasms in her larynx cause her vocal cords to close without control, creating a strained and broken voice that takes great effort to use.<\/p>\n<p>She began developing SD as an active, chatty woman in her thirties who ran her own business while raising four kids.<\/p>\n<p>\u201cMy voice started to get really weak, I had trouble projecting it. I was coaching a heap of kids\u2019 netball and tried to get my voice out and thought \u2018this is strange\u2019,\u201d Ms Hunt said.<\/p>\n<p>\u201cWhen I got into my early forties it got really severe. It got so bad I didn\u2019t like going out in public.<\/p>\n<p>\u201cI was terrified my voice wouldn\u2019t work. It\u2019s a horrible feeling when you go to speak and either nothing comes out or a very broken voice comes out.<\/p>\n<p>\u201cThen people say, \u2018what\u2019s wrong with your voice?\u2019 but it was really hard to explain because I didn\u2019t know what was wrong.<\/p>\n<p>\u201cI couldn\u2019t breathe, sitting in a chair I was so puffed out. I had grandkids and I couldn\u2019t read them a book.\u201d<\/p>\n<p>A spate of appointments with doctors and specialists came up empty and Ms Hunt was told there was simply nothing wrong.<\/p>\n<p>\u201cI thought \u2018I\u2019m not neurotic, I\u2019m not emotional, I\u2019m none of that. I just can\u2019t talk normally\u2019,\u201d she said.<\/p>\n<p>She was prepared to completely reverse her lifestyle by limiting talking as much as possible and surrounding herself in the safety of bushland and her rescue animals.<\/p>\n<p>But her life changed when, at 49 years old, she was finally given a name for the condition that had left her questioning her health for the better part of two decades.<\/p>\n<p>Ms Hunt\u2019s speech pathologist Ainslie Frost said SD can present in different ways, ranging from a strained voice to a breathy, weaker sound.<\/p>\n<p>\u201cIf you\u2019re listening to someone with SD, you\u2019d pick it up because they would have those interruptions to their voicing, pitch and loudness as well,\u201d she said.<\/p>\n<p>\u201cWhat\u2019s happening when Coral describes her voice as a broken voice is the muscles in her larynx are making her vocal folds close involuntarily and really hard at the wrong time.\u201d<\/p>\n<figure id=\"attachment_80850\" aria-describedby=\"caption-attachment-80850\" style=\"width: 300px\" class=\"wp-caption aligncenter\"><img loading=\"lazy\" decoding=\"async\" class=\"size-medium wp-image-80850\" src=\"https:\/\/timesnewsgroup.com.au\/bendigotimes\/wp-content\/uploads\/2022\/02\/DSC_0528-300x200.jpg\" alt=\"\" width=\"300\" height=\"200\" \/><figcaption id=\"caption-attachment-80850\" class=\"wp-caption-text\">Speech pathologist Ainslie Frost has been working with Ms Hunt to help her protect and care for her voice.<\/figcaption><\/figure>\n<p>Ms Hunt then began receiving Botox injections into her vocal cords to help relax her muscles and allow for more control over her voice, and woke up the morning after her first round astounded by what she heard.<\/p>\n<p>\u201cI couldn\u2019t believe it. It was like all my Christmases had come at once,\u201d she said.<\/p>\n<p>\u201cI got on the phone, I rang my kids, my friends, I went shopping. I just wanted to pull over at a bus stop and talk to the people there.\u201d<\/p>\n<p>However, the effects of the regular Botox injections always wear off a few weeks before Ms Hunt\u2019s next appointment and her symptoms of the incurable condition return every few months.<\/p>\n<p>\u201cI\u2019ve been to gatherings when my voice has been poor and once people hear my croaky or non-existent voice, they will completely dismiss me and talk to the people I\u2019m with, or even ask questions about me to them as if I can\u2019t answer and that\u2019s a bit humiliating,\u201d she said.<\/p>\n<p>\u201cI\u2019ve had the phone hung up on me numerous times.<\/p>\n<p>\u201cI\u2019m not an amoeba, I\u2019ve got a brain. Sometimes you get treated like you don\u2019t have a brain because you can\u2019t get your words out. People think if you can\u2019t express yourself effectively verbally, then for some reason you\u2019re not intelligent.<\/p>\n<p>\u201cI try not to let people upset me because I think it\u2019s a lack of knowledge of SD or other neurological conditions that affect the voice.\u201d<\/p>\n<p>Now 63 years old, Ms Hunt said she\u2019s grown in confidence since her diagnosis and wants to raise awareness of SD to create understanding and acceptance in the local community.<\/p>\n<p>She keeps a card on hand while she\u2019s in public that describes her condition to people because \u201cif you don\u2019t have a voice, you can\u2019t explain why you don\u2019t have a voice\u201d.<\/p>\n<p>Ms Frost said simple actions can be taken by anyone to help people with SD communicate in a healthy way, like moving in closer or finding a quieter spot to talk to minimise strain on their voice, and remaining patient during conversations.<\/p>\n<p>\u201cBy telling my story, I hope I can create an awareness of SD and I hope that people can be kinder for anyone with voice disorders,\u201d Ms Hunt said.<\/p>\n","protected":false},"excerpt":{"rendered":"<p>WHEN talking becomes especially difficult for Coral Hunt, she finds solace in being around her pets. \u201cI love being with my animals, that\u2019s where I find my peace and calm,\u201d she said. \u201cI think people can learn a lot from animals because they\u2019re very accepting and non-judgmental.\u201d Ms Hunt has spasmodic dysphonia, a rare neurological [&#8230;]<\/p>\n<p><a class=\"btn btn-secondary understrap-read-more-link\" href=\"https:\/\/timesnewsgroup.com.au\/bendigotimes\/news\/raising-awareness-of-a-rare-condition\/\">Read More&#8230;<\/a><\/p>\n","protected":false},"author":184,"featured_media":80849,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"inline_featured_image":false,"footnotes":""},"categories":[7],"tags":[],"post_folder":[],"class_list":["post-80848","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-news"],"acf":[],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v27.7 - 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