Saturday, January 19, 2019

The pain of Tourette's: 'I'm always covered in bruises

https://www.bbc.com/news/amp/health-46905085#click=https://t.co/xoVM7oSTAC

Punching walls is a favourite one of mine. Punching windows. I've broken three windows in the past year. Punching myself in the head, whacking my head against the wall."

Alice Franklin is 25, lives in London and has Tourette's syndrome.

She first started experiencing symptoms around four years ago and says: "I didn't even notice them or recognise them as tics.

"They were opening and closing my mouth and screwing up my eyes and then things deteriorated really quickly, I was shouting, swearing, jerking, shaking - any movement or sound I was doing it."

'Bruising and swelling'
Along with vocal tics such as swearing, Alice has also seen others develop which often cause her harm.

"Slapping myself across the face, banging my head on the table. All of these things are painful, all of these things hurt."

She also experiences "tic attacks" which are sudden bouts of continuous tics which can last minutes or even hours. Her most recent was three days into a new job.

"My whole body was shaking, I was grunting, my head was nodding and it lasted about an hour and a half. They're completely exhausting, where you can't stop moving and it feels like you're trapped in a body that someone else is controlling".

Image copyright ALICE FRANKLIN Alice Franklin's bruised hand
Image caption Alice has suffered bruising and swelling from punching things as a result of her tics.
Alice is one of an estimated 300,000 adults and children in the UK who live with the neurological condition, but what causes Tourette's is not clear.

Charity Tourettes Action has discovered that patients are facing long delays in diagnosis, treatment options are limited and there are lengthy waiting times to access the therapies that are available.

Prof Andrea Cavanna is a consultant in behavioural neurology at Birmingham and Solihull Mental Health NHS Foundation Trust.

He told BBC Radio 5 Live Investigates: "Although the exact cause is still unknown, it is thought that genetic mechanisms can predispose individuals to the development of tics, and the role of environmental factors is currently under investigation".

Tics - involuntary sounds and movements - are a key feature of the condition.

People often associate the condition with swearing or saying socially inappropriate things, but that only affects around 10% of those with the syndrome.

What gets less attention is the pain and discomfort that people, like Alice, experience daily as a result of tics.

'Dark side'
Image copyright CLAIR BECKETT Clair Beckett
Image caption Clair Beckett battled for four years to get a diagnosis.
Clair Beckett, who is 31, lives in Plymouth and is a dance artist.

She was diagnosed with the condition a year and half ago and says she can experience anywhere between 50 and 100 tics a day.

They range from uncontrollable wiggling of her toes and shaking of her wrists, to throwing her head back violently or her knees giving way - causing her to collapse to the floor.

Animals stop 12-year-old Tourette sufferer's tics
Welsh 'Tourette's jibe' Greggs worker suspended
Belfast mother calls for more support for sufferers
At times she has to use a walking stick and says the wear and tear causes a lot pain to her body.

"I get a lot of repetitive movements that cause strain and nerve damage," she says.

"I've got nerve damage in my right arm, I have real troubles with my neck and I do get really scared sometimes because the tics can be so violent that I'm so worried I'm going to do something really dangerous.

"The pain side and the physical disability that we experience is often on the lowest priority in terms of medical intervention.

"There's a real dark side and a very physical side that people really struggle with day-to-day."

Image copyright CLAIR BECKETT Clair Beckett
Image caption "I get a lot of pain in my back from twisting my spine or popping my chest," says Clair
Long-term damage
The charity Tourettes Action has carried out new research looking into the pain, injury and physical proble...

No comments:

Post a Comment

Al Arabia English

Canada extends Iraq, Ukraine military training missions https://english.alarabiya.net/en/News/world/2019/03/19/Dutch-prosecutors-arrest...