Dopa-responsive dystonia

Segawa’s dystonia, Segawa’s disease, DYT5 dystonia, progressive hereditary dystonia

What is dopa-responsive dystonia?

Dopa-responsive dystonia is a term that is used to describe a group of neurological movement disorders that can be treated with a medication called levodopa which is a synthetic form of dopamine.

What causes dopa-responsive dystonia?

Dopa-responsive dystonia is caused by mutations in a specific gene that leads to problems with the production of a chemical in the brain called dopamine.

As a result, incorrect signals are sent from the brain to the affected body part.

What are the symptoms of dopa-responsive dystonia?

The symptoms of dopa-responsive dystonia usually start in the feet and legs but they can also spread to the muscles of the arms and torso.

The severity of the symptoms is likely to fluctuate and worsen throughout the day.

They may include:

  • A stiff-legged way of walking.
  • Upward bending of the sole of the foot.
  • Feet that turn outward at the ankle.
  • Toe walking.
  • Muscle spasms.
  • Tremor.

Symptoms of Parkinsonism can also show. They may include:

  • Slow movement.
  • Stiffness.
  • Resistance to movement.
  • Problems with balance.
  • Unstable posture.

Are you affected by dopa-responsive dystonia?

If you’re affected by dopa-responsive dystonia, The Brain Charity can support you.

We are the only charity in the UK to be here for every one of the more than 600 different neurological conditions in existence. Individually, many are rare, but combined, they affect 1 in 6 people.

We provide practical help on all aspects of living with dopa-responsive dystonia, emotional support such as counselling, phone befriending and group therapy and social activities to people with dopa-responsive dystonia and their family, friends and carers from all over the UK from our centre in Liverpool.

Looking to talk to someone?

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Phone us

Contact The Brain Charity now

Our friendly Information & Advice Officers are here to help. We endeavour to respond to all enquiries within 10 working days.

0151 298 2999

Looking to talk to someone?

  • Please tell us which neurological condition you are affected by and what you need support with.

Caring for someone with dopa-responsive dystonia

We support carers, friends and family too

Are you a carer for or relative of someone with dopa-responsive dystonia? It’s just as important for you to look after your own physical and mental wellbeing too.

The Brain Charity provides free support for carers, friends and family of people with any form of neurological condition, including dopa-responsive dystonia, from anywhere in the UK.

We also run an additional carers advocacy service for all carers in Liverpool, regardless of which type of condition the person they care for has.

You don’t need to be a formal or registered carer

We can help you even if you don’t view yourself as a formal carer or claim Carer’s Allowance. Find out some of the ways we support carers below.

Other resources

The Brain Charity's library

The Brain Charity’s library has a range of resources on dopa-responsive dystonia and on many other disability-related issues.

Visit our library to read:

Or search the catalogue online here.

Support groups

Dystonia UK Liverpool and Merseyside

Are you interested in setting up a dystonia support group, or do you already run one? Email to let us know.

Alternatively, you can check out our list of related support groups here.

Dystonia UK Manchester

A support group that provides those who are affected by dystonia with the opportunity to listen to a speaker on dystonia or a subject relating to general health and wellbeing.

They meet two times a year at a central Manchester venue.


Phone: 0845 899 7131


Brain & Spine Foundation Neuro Social

A weekly online support group for anyone affected by a neurological condition to meet others and to give each other support.


Phone: 0808 808 1000


Support groups at The Brain Charity

Are you interested in setting up a dopa-responsive dystonia support group, or do you already run one? Email to let us know.

Alternatively, you can check out our list of related support groups here.

Other charities

Dystonia UK

Brain Research UK

The National Institute of Conductive Education (NICE)