A painful and soul-crushing syndrome
Emily Boulton says having Tourette Syndrome can sometimes be hilarious – but it can also be exhausting, painful, difficult and soul crushing.
There are some days when the 19-yearold, who grew up in Ha¯wera and whose family now live in New Plymouth, collapses every time she tries to walk – stopping her from attending classes, socialising and shopping. Bolton, a student in Dunedin, is also unable to drive, cycle and scoot.
Cooking meals is also out of the question. ‘‘It’s very dangerous. At the moment, I don’t even touch knives. I’m scared I’m going to hurt myself or do something horrible because of my tics,’’ Boulton said.
Tourette Syndrome is a disorder which causes uncontrollable repetitive movements and sounds, called tics. Each person displays different tics with varying frequency and severity. But despite its potentially debilitating effect,
Tourette Syndrome is not recognised as a disability, leaving those who have it to face a shortage of support and funding.
To help people with Tourette Syndrome and their families get access to funded support services, the Tourette’s Association of NZ has launched a petition calling on the Ministry of Health to recognise that the syndrome is a disability.
Boulton said she would be overjoyed if Tourette Syndrome was recognised. ‘‘It would make my life and the lives of people around my life so much easier – it will be a weight lifted off my shoulders.’’ She was frustrated that she did not qualify for support services and was worried about her future, unsure if she could land a full-time job.
Robyn Twemlow, the association’s executive director, said when a young person presented with tics they were referred to mental health services, which did not provide funding for physical treatments and therapies. ‘‘Funding for the likes of mobility assistance or carer support falls under the disability criteria and Tourette Syndrome is not recognised as such.’’
Getting access to disability services and individualised funding would be ‘‘lifechanging for those individuals living with complex physical tics’’, she said.
The Ministry of Health’s deputy directorgeneral disability, Adri Isbister, said Tourette Syndrome was described as a neurological disorder which sat within the umbrella term of neurodevelopmental conditions. ‘‘People with Tourette’s may be eligible for Disability Support Services if they have an eligible cooccurring disability.’’