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.
Introduction to TSC (690 KB)
Genetics & TSC Leaflet (116 KB)