Tuberous sclerosis

Tuberous sclerosis complex, Bourneville disease, TSC, T.S.C.

What is tuberous sclerosis?

Tuberous sclerosis is a rare genetic condition that causes mainly non-cancerous tumours to develop in different parts of the body such as the brain, skin, kidneys and lungs.

It can be present at birth but issues develop gradually.

What causes tuberous sclerosis?

Tuberous-sclerosis is caused by mutations in the TSC1 or TSC2 genes.

These genes are involved in regulating cell growth, and the mutations lead to uncontrolled growth and multiple tumours throughout the body.

It can happen spontaneously and isn’t inherited.

What are the symptoms of tuberous sclerosis?

Tuberous sclerosis symptoms can be either mild or severe and may include:

  • Epilepsy
  • Learning difficulties
  • Skin abnormalities
  • Breathing difficulties
  • A build-up of fluid on the brain

There is no cure for tuberous sclerosis, but there are treatments that can help manage some of the symptoms.

If you’re concerned that you or your child may have tuberous sclerosis, it’s important to see a doctor for a diagnosis.

Are you affected by tuberous sclerosis?

If you’re affected by tuberous sclerosis, 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 tuberous sclerosis, emotional support such as counselling, phone befriending and group therapy and social activities to people with tuberous sclerosis 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 tuberous sclerosis

We support carers, friends and family too

Are you a carer for or relative of someone with tuberous sclerosis? 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 tuberous sclerosis, 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 tuberous sclerosis and on a wide range of disability related issues.

Support groups

Support groups at The Brain Charity

Are you interested in setting up a tuberous sclerosis 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

Tuberous Sclerosis Association