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. This booklet has been produced by the Tuberous Sclerosis Association (TSA) to help those families and individuals newly diagnosed to understand more about the Tuberous Sclerosis Association.
It is important to keep in mind that TSC varies from person to person and that most people with TSC do not have all of the features described. If you find you would like further information on any particular aspect of TSC or would like advice or support please contact us
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. TSC growths have different names depending on which organ they are found in.
The impact of TSC varies considerably, with some people being relatively mildly affected (they may not even know they have TSC) and others being more significantly affected. This impact may be evident in the early years, or not until adulthood. Thanks to research findings and with improved medical care, people with TSC can expect to live healthier lives with a normal life expectancy, in most cases.