When Analise Twemlow was seven years old she came home from school one day and told her mum that she didn’t want to live anymore. According to Analise everyone hated her, her teacher told her she was stupid and she was tired of being called a spaz and weirdo.
At age seven Analise was already showing the tell-tale signs that would eventually lead her to being diagnosed with Tourette Syndrome.
Her parents had first taken her to the GP at age three after she had blinked continually for weeks. They were told the blinking was probably just a childhood tic and that she would grow out of it.
Over the next six years body twitches, collapsing legs, stuttering and constant vocal utterances developed as well as diagnoses of ODD (oppositional defiance disorder) and ADHD.
Finally in June 2013 a child psychiatrist delivered the news that would stun Analise’s parents – their child had Tourette Syndrome.
“We had no idea that all her funny quirks would be Tourette’s,” explains Aaron Twemlow, her dad. “All we knew of Tourette’s was swearing and she’d never sworn in her life.
Over time however coprolalia (obscene vocal tics) did present along with copropraxia, the making of obscene gestures.
These tics however were nowhere near as painful and damaging as some of the motor tics that would develop – tics like stabbing herself with sharp objects, constant neck jerking and kicking herself.
After being diagnosed Analise made the decision that she would like to tell her classmates that she had a neurological disorder and that was why she did the things she did.
“I had been bullied and called names for so long, I just wanted it to stop,” says Analise. “I thought if I told them that my brain made me do these things, and that I couldn’t help it, that they might stop.”
And it worked. The kids were more accepting, the name calling practically stopped and the teachers researched ways to best support her in the classroom.
“The general public are, for the most part, okay with her outbursts when we explain that she has Tourette’s,” says Aaron.
“But there have been times when she has been told off in shops or asked to be quiet on the bus. She’s pretty used to it now and when she can be bothered she will tell them that she has Tourette’s, otherwise she just ignores them.”
Making the decision to talk to her peers about having Tourette Syndrome was the first of many steps that Analise would take in raising awareness of the disorder and in reaching out to others with tics.
At Camp Twitch 2014 it was Analise’s easy-going nature and confidence that rubbed off on other kids and inspired many to talk more openly about life with Tourette’s; and to explain the disorder to their peers and the general public.
Since then Analise shared the stage with her mum at TEDx Christchurch 2015 to talk Tourette’s as well as spoken at numerous events.
In 2016, she was awarded a Youth Award by the New Zealand Ministry of Youth for her community work raising awareness of Tourette Syndrome; and in 2017 she was presented with a Community Service award by the Christchurch City Council after being nominated by her school.
“I’d love to travel the world telling people about Tourette’s and asking people not to bully people like me for things that we can’t control,” says Analise. “That would be the coolest job.”
Get an insight into how difficult life is living with Tourette Syndrome by watching “CAMP TWITCH”: The Documentary on TV2, June 26th at 8.30pm
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