Tuberous sclerosis complex

Bourneville disease, TSC

What is TSC?

Tuberous sclerosis complex (TSC) is a rare genetic condition that causes non-cancerous tumours to grow all over the body.

The tumours are found on major organs such as the brain, heart, lungs and skin. The condition is present at birth, but may go unnoticed whilst tumours are small.

What causes TSC?

TSC is caused by mutations in the TSC1/2 genes. The mutated genes cause uncontrolled cell growth, which leads to the development of tumours all over the body.

The mutation can be inherited, but most cases arise from new mutations and can affect anyone.

What are the symptoms of TSC?

The symptoms of TSC will vary, depending on location of the tumours and their size.

Symptoms include:

  • Epilepsy
  • Learning difficulties
  • Skin abnormalities
  • Breathing difficulties
  • Hydrocephalus – fluid on the brain

Are you affected by TSC?

If you’re affected by TSC The Brain Charity can support you.

We are the only charity in the UK to be here for every one of 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 TSC, emotional support such as counselling, phone befriending and group therapy and social activities to people with TSC 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 TSC

We support carers, friends and family too

Are you a carer or relative of someone with TSC? 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 TSC, from anywhere in the UK.

We also run 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

Support groups

Tuberous Sclerosis support group

A small Facebook group for those with lived experience of TSC.

Share your thoughts and support each other here.

Other charities

The Tuberous Sclerosis Association