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Belfast mother living with Tourette’s syndrome shatters the misconception that “it’s all about swearing”.
Claire O’Donnell, 36, from Short strand, was diagnosed with the disease after seven years of searching for answers and says it is “disabling”.
The young mother of three used the power of music to raise awareness for Tourette’s syndrome during her awareness month.
Gilles de la Tourette syndrome is a condition that causes a person to make involuntary sounds and movements called tics, which are the main symptom. They usually appear in childhood between 2 and 14 years old.
People with Tourette’s syndrome have a combination of physical and vocal tics, according to the NHS.
Examples of physical tics are:
- turn signal
- eye rolling
- grimacing
- shrug
- shaking of the head or limbs
- jump
- twirl
- touching objects and other people
Examples of vocal tics are:
- growl
- throat clearing
- whistling
- cough
- tongue click
- Animal sounds
- say random words and phrases
- repeat a sound, word or phrase
- swear
Swearing is rare and affects only about 1 in 10 people with Gilles de la Tourette syndrome, but it is often a symptom that first comes to mind when those without personal experience of Tourette’s disease.
“There is no cure for Tourette’s syndrome,” Claire told Belfast Live.
“Not many people would have it in serious capacity at my age and a lot of people think that only children with Tourette and everyone with the disease swear, which is not true. This is a misconception. town of Tourette.
“For me, it took me seven years to be diagnosed and I was 28. Over the years my Tourette has progressed and has become quite crippling and difficult to live with. I have three fantastic children who have me. massage the shoulders and would help me My Tourette involves my head shaking from side to side.
“You hate going out in public because a lot of people would watch you. I also make sounds, not to be confused with swear words. It’s a boring thing that people don’t know much about Tourette, that he there are these misconceptions. That’s why it’s good to talk about it and spread this awareness. “
For Claire, she would have problems with coordination and balance, due to her Tourette syndrome which she says is similar to a merry-go-round.
Claire couldn’t walk in a straight line, even with someone’s help, and has a series of other debilitating side effects beyond her control.
“I would try to control them but it’s worse and it makes my tics a lot harder and stronger. It’s really hard. I’m constantly dizzy, every day.
“My kids are fantastic. They grew up with it so they don’t know the difference. It’s other people who saw me as different. Their friends too, because they were around me every day, they I was used to it, I could ‘I was lucky to have three better children, honestly.
“I want to raise awareness of Gilles de la Tourette syndrome and I think it’s good to start with children because at a young age, they are like blank canvases and they don’t know anything about what we teach them. my children’s school is aware of my condition and they are extremely understanding.
“The video took me years to hit the publish button. I always loved singing and for a number of years Tourette kept me from singing and that was largely due to embarrassment and being stared at. I had never seen myself in the mirror singing. I was shocked because I could see what other people saw. I learned to deal with it.
“It was hard but singing is everything for me. It calms my tics which are unreal. Music does things to people and that’s how it helps me. With that, I just want to raise awareness and show people. people that I can still sing about even though I have that. For many years I thought my life was over. I really hope my story inspires and educates other people. “
For more information on Gilles de la Tourette syndrome, visit this link.
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