Melanie, whose name has been changed to protect her privacy, is a young woman from China, who first came to Australia in 2016 to experience life studying abroad.
After visiting many specialists in multiple cities around China and trying a range of western treatments and Chinese medicine, Melanie was first diagnosed with Tourette syndrome at just 6 years old.
Tourette syndrome is a neurological disorder that affects the nervous system, causing uncontrollable repetitive movements or sounds – known as tics.
Melanie describes her tics as a ‘power inside your body’ that forces you to move or speak. She explains, “you feel like you can control it, but the power is bigger than your self-control… then you lose, and you have to let it out.”
“Tourette’s wasn’t really a common concept in China,” Melanie mentions. She continues, “a lot of parents don’t know what it is, and they just think you’re being naughty.” In the beginning, Melanie’s parents thought they were able to intervene and discipline her until they realised this was not something they could change; this might actually be a medical condition.
Melanie says the most challenging time for her was during Year 7 to Year 9, “I nearly dropped out of school.” Melanie explains, “I just couldn’t sit still in class. Even my parents explained to the school, my teacher and my classmates, and they still made fun of me.”
“Yeah… you get bullied at school,” Melanie states.
After living with Tourette syndrome in both China and Australia, Melanie reveals that the bullying culture is far worse here than in China. She says, “in China the teacher would do something, and the students would just stop. Everyone is scared of the teachers.”
High school is hard enough while growing up; you’re dealing with a lot of change and new experiences, let alone having Tourette syndrome.
Melanie is a part of a medicinal cannabis trial for patients with Tourette syndrome, currently being run here at Wesley Medical Research.
This is the first Australasian clinical trial for medicinal cannabis oil in patients with Tourette syndrome. Spanning across 6 weeks, the trial will measure the use of cannabis oil in comparison to tic severity, psychiatric and cognitive symptoms, as well as quality of life.
Since Melanie has been on this trial, she says, “I feel the power inside is less.”
“I heard cannabis oil can be used for Tourette’s a few years ago, but I never had the chance to try it.” After stopping medication some time ago, Melanie says this trial was an opportunity for her to try something new, “it might change my life, it might cure it (her Tourette’s) forever.”
Melanie is now opting to continue to take this medication and looks forward to a future where cannabis oil can one day become legalised in Australia.
With 1 in 100 children currently living with Tourette syndrome, it is crucial that we continue to run these kinds of ground-breaking clinical trials.
With your help, we can break the stigma and create a better life for those living with Tourette syndrome.