Mum campaigns for better awareness of Tourette’s Syndome

LAST UPDATED: 7 Mar, 2013 @ 12:22
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Mum campaigns for better awareness of Tourette’s Syndome

By Frances Leate

WHEN Pilar De Monserrat’s three-year-old son began using swear words he had never even heard at home, she knew there was something wrong.

Marco’s abusive language, often directed at his mum, was always followed by the youngster feeling remorse and sadness at his behaviour and it was clear this was something he could not control or stop.

She said: “It was so upsetting and I knew immediately it was not normal.

“He would feel so bad afterwards and say how sorry he was but I told him off because I didn’t realise he couldn’t help it.”

Concerned Pilar took Marco to see several psychologists but was told he was simply ‘naughty’ and even that it was because he had not been educated properly.

It wasn’t until he visited a private psychologist in Madrid at the age of seven years that Marco was finally diagnosed with Tourette’s Syndrome, a condition that affects the brain and nervous system and causes involuntary sounds and movements (known as tics).

Pilar, from San Pedro, said: “I was devastated for him. I immediately got as much information as I could from the internet and discovered the condition not only caused these verbal and physical outbursts but that it causes depression, low self-esteem and obsessive behaviour.

“He is such a lovely boy and very intelligent but this condition makes life very hard for him.”
She added: “Some children are never even diagnosed because so many health professionals don’t know about it and this also means that people are ignorant to it.

“The worse thing is when we are out and he has an attack, people are shocked by his outbursts and I hear them say the mother should be disciplining him, but there is no point in doing that.”

Thanks to regular visits to a psychologist and medication, Marco is coping well with his condition but sometimes suppresses his tics and verbal outbursts in school, which leaves him exhausted and agitated when he gets home.

Shortly after the diagnosis the family contacted the Cordoba-based support group, ASTTA (Asociacion Sindrome de Tourette y Trastornos Asociados) and set up a branch in Malaga which meets every month.

There are around 30 families involved in the Malaga group and the De Monserrat family is hoping to hear from anyone else who thinks they or a family member may have the condition.

For more information and for details about their March meeting call 617 383 655 or email: [email protected]

 

 

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