New Diagnosis

Every month around 10 babies are born in the UK with TSC. An estimated 1 million people world-wide have TSC. Some will be diagnosed with TSC very early in life whilst others may not be diagnosed until later childhood, adolescence or adulthood.

If you or your child have been diagnosed with TSC it is important to remember that most people affected by TSC will live a normal lifespan. You may want to ask your GP to refer you to your regional genetics centre for genetic counselling. For information about genetic counselling in the NHS click here. Any problems related to their TSC should be monitored and managed by the appropriate professionals. If you live in the UK and would like more information and advice, or you simply wish to talk to someone, contact one of our TSC Advisers. Visit the staff pages for contact information.

The TSA has produced a booklet to help those families and individuals newly diagnosed to understand more about TSC.

Download the new 'Introduction to TSC' leaflet

Introduction to TSC Introduction to TSC (690 KB)

Download our leaflet on genetics and TSC

Genetics & TSC Leaflet Genetics & TSC Leaflet (116 KB)


TSC is a genetic condition that can lead to growths in various organs of the body, but those most commonly affected are the brain, eyes, heart, kidney, skin and lungs. These growths may also be referred to as tumours but they are not cancerous. When they cause problems it is mainly because of their size and where they are in the body.

Our A-Z Glossary will help you to understand some of the medical terms relating to TSC that you may hear or read about.