A Family's Anguish Turns To Hope Thanks To Cannabis Trial
It hasn't been an easy road for the team running Australia's first medicinal cannabis trial to treat Tourette's Syndrome.
The hardest part? Getting their hands on the drug.
"Oh my goodness it's probably easier to deal with plutonium than cannabis," laughs Professor Iain McGregor, who is part of the team.
"There's an awful lot of licences required - ours actually comes from Switzerland!"
McGregor is the academic director at the Lambert Initiative at Sydney University, which has teamed up with Brisbane's Wesley Medical Research, to run the groundbreaking research into a syndrome which causes sufferers to uncontrollably tic physically and/or verbally.
"Because of the illegality of cannabis through the ages it's been traditionally very difficult to run these clinical trials but things are getting a bit more relaxed now so we can do a lot of good science," he says.
They hope it will lead to a world breakthrough in Tourette's treatment.
Chris Wright, 31, is among the first of 24 patients needed for the trial.
He throws his head, neck, and shoulders around violently during our short interview.
Wright has battled the syndrome most of his life.
"When you have Tourettes, every day becomes almost like Ground Hog Day - you wake up and you know the day is going to be painful, frustrating and exhausting," he says.
"Mentally it's really draining because I am constantly thinking about my tics, whether it's me trying to actively hold them in, or physically, it's pretty painful and I generally have a sore neck when I come home from work."
Wright was forced to leaving school early because he was bullied relentlessly and found it hard to concentrate. He first noticed something amiss around the age of seven when he started flicking his arms. Everyone thought it was just a bad habit. He was formally diagnosed with Tourette's Syndrome at age 12.
His dad Steve and mum Glenda are in awe of their son's courage.
"He's got enormous willpower and great strength of character," they both say, almost in unison while holding hands.
"The unknown, it's so scary when you are first diagnosed for the families," Glenda adds.
During our interview tears well in both their eyes, which prompts Chris to give his mum a big hug.
If medicinal cannabis did ease their son's condition, they believe it would be life changing for their entire family.
"This would be an absolute breakthrough because all the existing medications, they subdue and suppress the urge but they don't take it away and the pain is still there," Steve says.
"And the tiredness, the overwhelming tiredness, on Chris' days off he just sleeps."
Chris agrees existing medications have taken their toll.
"They have pretty terrible side effects, at one point I tried 12 different medications over the course of a year, a few of them put me in hospital.
"So I suppose what I'm hoping to get out of this is the positives - less tics, little bit more relief, little bit better quality of life - without the negatives."
And to him and his family, the trial has already delivered
"If this trial provides hope - I think hope is the biggest thing for people out there really suffering - it's worth pursuing, let's do it!"
People are still needed for the trial and can register here.