Ardsley woman shines light on Tourette's as she helps NY's landmarks shine during Tourette Syndrome Awareness
It's an important moment for Ardsley's Alexandra Cuttler, 20, who was first diagnosed with the condition eight years ago.
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On Sunday, May 19, New York will illuminate 15 landmarks across the state in teal blue, including the Gov. Mario M. Cuomo Bridge, in recognition of Tourette Syndrome Awareness, which runs from May 15 to June 15.
It's an important moment for Ardsley's Alexandra Cuttler, 20, who was first diagnosed with the condition eight years ago.
"It was the beginning of finding a way through the jungle for me," she said.
She was among the thousands of children who go undiagnosed for long periods in the United States. The Centers for Disease Control and Prevention reports that about half of the children aged 3 to 17 years old are undiagnosed, despite showing symptoms. The CDC estimates one out of every 162 children (.6%) have Tourette syndrome.
Armed with a diagnosis and new information, Cuttler says she has made it her life's mission to help others, raise awareness and break the stigma surrounding the condition.
"I had a lot of people who supported me and guided me down the right path and that's what I'm trying to do for other people," she said.
Tourette's Association of Greater New York President Sue Conners said people must understand the complexity of the condition to support and help those who have it.
"It's a neurological-biological disorder that is not controllable," Conners said. "I want you to know we can't help it, we can't stop doing this."
Tourette syndrome is a lifelong neurological disorder characterized by involuntary movements and vocalizations called "tics." There is no cure for the condition.
It is frequently accompanied by other neurological disorders like ADHA, OCD, a learning disability, anxiety or depression.
Cuttler and Conners agree while people can live long, healthy lives with Tourette's, the stigma makes it more difficult.
Conners said children with Tourette syndrome are more likely to struggle in school or have behavioral issues that are out of their control. She added that other kids and adults who don't understand the condition often discipline, bully, or harm the self-esteem of the kid who can't control it.
"I wanted to stay in bed and curl up and let the world pass me by and my mom just wouldn't let it happen and she made me get up every day and keep living," Cuttler said. "Ever since then, when I'm having a hard day I remember that and I get up and I keep fighting."
Through Cuttler's advocacy, both locally and statewide, she connected with Gov. Kathy Hochul's office to light up those landmarks. Her goal is to raise awareness and foster more understanding and acceptance.
"It's hope, seeing that you're not alone, it is a light in the darkness that you are experiencing," Cuttler said.
Cuttler and others around the state including at Niagara Falls in Buffalo are planning to host parties on Sunday evening at each location being lit up to gather as a community and recognize the progress being made and work still to be done surrounding Tourette's.
