LISTEN: Tourette Syndrome is not classified as a disability in New Zealand, despite its potentially debilitating effect.
That means there is no support from the government for anyone who lives with the syndrome including accessing much-needed funding.
Tourette Syndrome is a disorder which causes uncontrollable repetitive movements and sounds, called tics.
19-year-old Emily Boulton has tourettes and has thrown her support behind a petition to get the syndrome recognised as a disability in this country.
"I'm not completely sure why it hasn't been recognised as a disability. It might be because the Ministry of Health doesn't see it as a priority," she told Lloyd Burr Live.
Boulton believes the government doesn't understand how much it impacts individuals, just like her.
There are some days when the Dunedin student collapses every time she tries to walk.
"It means I can't stand for a long or walk long distances," she told Magic Talk.
Boulton says her condition is "so painful" and very isolating at times.
The syndrome affects her everyday life – stopping her from attending classes, socialising and shopping. She can't drive or cycle.
Cooking meals is also out of the question and she says it's very dangerous.
Each person displays different tics with varying frequency and severity.
The Tourette’s Association of NZ has launched a petition calling on the Ministry of Health to recognise that the syndrome is a disability to help people with Tourette Syndrome and their families get access to funded support services.
More than 3000 people have signed the petition so far.
Listen to the full interview with Emily Boulton above.
Magic Talk | Lloyd Burr Live, weekdays from 4pm.