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  • sbs-living-with-stories
  1. Support us
  2. Your stories

Living with stories

We know how isolating this condition can be. We also know that it is possible you will not know anyone else who has the condition and sometimes it can be a struggle to even find people who have heard of it.

You are not alone and we wanted to share with you some stories of members and supporters who are on this journey with you.

If you would like to share your story, please email [email protected] and a member of our team will be in touch. We want you to share your story in your own time and your own way, but if you’re wondering about some of the practicalities, we’ve got some handy tips here.

Alison's story

Alison's story

Alison is a Qualified Counsellor with neck dystonia (cervical dystonia / spasmodic torticollis). Read more

Published: 14th May, 2020

Updated: 14th December, 2021

Author: Bernie McMahon

Andy's story

Andy's story

Andy's wife, Mandy, has neck dystonia (cervical dystonia). Andy and Mandy are joint coordinators of the Berkshire Dystonia UK Support Group and Andy serves as a Trustee of Dystonia UK. Read more

Published: 2nd September, 2020

Updated: 11th September, 2020

Author: Bernie McMahon

Callum's story

Callum's story

Callum's story, as told by his dad Neil. Callum is a young man with Down Syndrome who has neck dystonia (cervical dystonia). Read more

Published: 2nd October, 2020

Author: Bernie McMahon

Chinny's story

Chinny's story

Chinny has whole body dystonia (generalised dystonia) and channels her feelings about the condition into her art. Read more

Published: 15th May, 2020

Updated: 8th July, 2020

Author: Bernie McMahon

Donald's story

Donald's story

Donald tells his story of living with neck dystonia (cervical dystonia) and how he continues to challenge himself to raise awareness of the condition. Read more

Published: 23rd September, 2020

Updated: 2nd October, 2020

Author: Natalia Kucia

Jane's story

Jane's story

Jane talks about her experience of coping with eye dystonia (blepharospasm). Read more

Published: 18th May, 2020

Updated: 8th July, 2020

Author: Bernie McMahon

Joseph's story

Joseph's story

Joseph tells his story of living with whole body dystonia (generalised dystonia). Read more

Published: 14th May, 2020

Updated: 8th July, 2020

Author: Bernie McMahon

Julia's story

Julia's story

Julia shares her story of living with neck dystonia (cervical dystonia) and pregnancy. Read more

Published: 2nd September, 2020

Updated: 22nd September, 2020

Author: Bernie McMahon

Julie's story

Julie's story

Julie tells the story of how her son Thomas coped with his mum having dystonia (Meige Syndrome). Read more

Published: 14th May, 2020

Updated: 14th December, 2021

Author: Bernie McMahon

Lana's story

Lana's story

Lana has a provisional diagnosis of paroxysmal dystonia and dyskinesis. Lana's story is told by her mum Georgia. Read more

Published: 23rd September, 2020

Updated: 2nd October, 2020

Author: Bernie McMahon

Life regardless

Life regardless

Short documentary by Laura Jane about her father who has dystonia. Read more

Published: 14th May, 2020

Updated: 14th December, 2021

Author: Bernie McMahon

Luca's story

Luca's story

Luca's story, as told by his mum Emma. Luca has whole body dystonia (generalised dystonia) caused by the DYT1 gene. Read more

Published: 14th May, 2020

Updated: 8th July, 2020

Author: Bernie McMahon

Roger's story

Roger's story

Roger lives with mouth, tongue and jaw dystonia (oromandibular dystonia) and has compiled a list of practical tips gleaned from his own personal experience, medical articles, speech therapists and fellow members. Read more

Published: 15th May, 2020

Updated: 14th December, 2021

Author: Bernie McMahon

Ross's story

Ross's story

Ross talks about his experience of coping with neck dystonia (cervical dystonia / spasmodic torticollis). Read more

Published: 14th May, 2020

Updated: 8th July, 2020

Author: Bernie McMahon

Vanessa's story

Vanessa's story

Vanessa is a musician who was diagnosed with neck dystonia (cervical dystonia) in June 2016. Read more

Published: 15th May, 2020

Updated: 14th December, 2021

Author: Bernie McMahon

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Latest

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Most read

  • What is dystonia?

    What is dystonia?

    Dystonia is a neurological movement disorder that is estimated to affect at least 100,000 people in the UK. Learn about it here and request an information booklet.

  • What are the symptoms?

  • What causes dystonia?

    What causes dystonia?

    The cause of dystonia is not yet fully understood, in some cases at least it can be attributed to a chemical imbalance in the part of the brain called the basal ganglia, a part which helps to control movement.

  • What are the symptoms?

  • What are the symptoms?

  • What are the common treatments?

  • What are the common treatments?

  • What are the causes?

  • What are the causes?

  • Who does it affect?

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Dystonia UK is the operating name of The Dystonia Society. The Dystonia Society is registered as a charity in England and Wales (1062595) and in Scotland (SC042127)


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