Dysautonomia

Riley-Day syndrome, HSAN type III, autoimmune autonomic ganglionopathy, diabetic autonomic neuropathy (DAN), multiple system atrophy (MSA), postural tachycardia syndrome (PoTS)

What is dysautonomia?

The term dysautonomia is used to describe any medical condition that causes the autonomic nervous system to stop working properly.

Usually, the autonomic nervous system automatically controls actions like your heart rate, breathing and digestion, without you thinking about it.

If it does not function correctly, this may affect heart rate, blood pressure, digestion, kidney function and temperature control.

What causes dysautonomia?

Dysautonomia can be caused by another condition, such as diabetes, sclerosis, rheumatoid arthritis, celiac, Sjogren’s syndrome, lupus and Parkinson’s.

What are the symptoms of dysautonomia?

There is currently no cure for dysautonomia, but there are treatments that can improve quality of life.

Symptoms of dysautonomia include:

  • lightheadedness
  • fainting
  • unstable blood pressure
  • heart beating too fast or too slow
  • malnutrition

Are you affected by dysautonomia?

If you’re affected by dysautonomia, 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 dysautonomia, emotional support such as counselling, phone befriending and group therapy and social activities to people with dysautonomia from all over the UK from our centre in Liverpool.

Looking to talk to someone?

Woman smiling, making eye contact and holding the hand of another woman to comfort her

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 dysautonomia

We support carers, friends and family too

Are you a carer for or relative of someone with dysautonomia? 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 dysautonomia, 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.

Carer support from The Brain Charity in Liverpool Practical help

Support for carers

All The Brain Charity's services are free for carers and family members of people with neurological conditions too.
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Friends performing in The Brain Charity Choir Information

Events and activities

What's on at The Brain Charity.
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Other resources

The Brain Charity's library

The library at the Brain Charity has a range of resources on dysautonomia and on a wide range of disability-related issues.

Living with a rare condition: The effect on Mental Health

Support groups

Find a local support group (Dysautonomia International):

Connect with others

Facebook group for parents of children with PoTS:

www.facebook.com/groups/ParentsofPeoplewithPoTS

Support groups at The Brain Charity

Are you interested in setting up a dysautonomia support group, or do you already run one? Email activities@thebraincharity.org.uk to let us know.

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

Other charities

UK Potsies (organisation dedicated to raising Postural Orthostatic Tachycardia Syndrome awareness in the UK)

Website: www.ukpotsies.org.uk

Dysautonomia International

Website: www.dysautonomiainternational.org

Jnetics (charity working to make a difference to the prevention, diagnosis and management of Jewish genetic disorders)

Website: www.jnetics.org
Email: info@jnetics.org