Tourettes syndrome

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Hellie78
Hellie78 Online Community Member Posts: 1 Listener
edited October 2021 in Rare, invisible, and undiagnosed conditions
Hi everyone,
My name is Helen and I live in Pembrokeshire with my husband and 3 girls. My 16 year old is autistic and my 13 year old has tourettes syndrome, adhd and is selective mute. 
I am supporting a campaign to get medical care for our children with tourettes syndrome. Most of the UK has none. Wales has 1 specialist who doesn't see children. Tourettes isn't just swearing. It can be life changing and so debilitating. My daughters life has changed beyond recognition.
She has to use a wheelchair most days due to drop tics, has self harming tics such as biting and punching herself as well as vocal tics including swearing and she also loses use of her limbs. 
Please please can you help us? We have less than 4 weeks to get the signatures we need to get it debated in Parliament and we have just less than half the number needed

https://petition.parliament.uk/petitions/575370

Shared with permission from Scope

Thank you so much
Helen x

Comments

  • Tori_Scope
    Tori_Scope Scope Posts: 12,468 Championing
    Hi @Hellie78 :) Thanks for sharing the petition. It's certainly a worthy cause. Someone close to me has Tourette's and I agree that not enough is understood about it, and can imagine there's not a lot of support out there.

    Just to let you know, I removed your duplicate post in the mental health problems category. I know on some forums it's better to post in different categories, or 'boards', but many members navigate our community by reading through the list of most recent discussions, and duplicate posts can clog this up. 

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