00:00Jasmine Edson was 17 when she experienced her first tick attack.
00:07In that moment I had no idea what I was doing, no idea what I was saying, no idea like how
00:16I was moving or what was going on, so it was a really scary experience for me.
00:2012 months of tests and referrals later, she was diagnosed with Tourette's Syndrome.
00:25Knowing that I had that independence ripped away from me when my tick started was a very upsetting, vulnerable feeling.
00:31And, you know, at 17 you're thinking about finishing school and going to uni and maybe travelling,
00:37and so to have those experiences kind of taken away from me by this condition, it was really impactful.
00:42Around 1 in 100 Australians have Tourette's.
00:45The millennial pause.
00:47The first national survey of people with the condition was released in June.
00:51The findings highlighted a shocking reality.
00:53One in four adults and one in ten children with Tourette's had attempted suicide.
00:58That being the statistic of one in four adults, it, yeah, it doesn't surprise me.
01:02And I just think more people need to know that it doesn't surprise the rest of us.
01:06Those things aren't symptoms of having Tourette's.
01:08They're symptoms of society treating Tourette's wrongly.
01:12The way Tourette's is perceived was highlighted in the Federal Parliament last year.
01:17Have you got Tourette's or something?
01:21While the Prime Minister apologised shortly after making that remark, it left the Tourette's community determined to make a change.
01:28We're the loudest people in the room, and yet somehow we're still invisible to the people that matter.
01:34Dozens of advocates are campaigning to improve awareness and pushing for national disability insurance scheme support.
01:42South Australia have been the first government to meet us where we stand and listen to what we're saying,
01:48rather than just kind of brushing us off and saying, yeah, but everyone's got problems.
01:52I have asked our department to help host a conversation that might include public awareness and how we do that together.
02:02So I think that is the next step.
02:05Tourette's syndrome does not qualify for NDIS support because it isn't considered a permanent condition.
02:10A National Disability Insurance Agency spokesperson says people with severe Tourette's may meet the requirements.
02:17People with those problems are actively getting turned away.
02:22So it's one thing for them to say that, it's a very different thing for them to act upon that.
02:26There is not enough compassion, there is not enough empathy to the condition that we deal with
02:32and to the lives that we have to live for the rest of our lives.
02:36Fighting for better care and recognition.
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