Our information pages should not be used as a substitute for medical advice. Readers are warned not to take any action without first seeking medical advice.
These pages have been written by TSA and reviewed by our medical advisors.

Clinical Guidelines

Diagnostic criteria for TSC

Surveillance and management guidelines for TSC

Signs and Symptoms

The genetic changes that cause Tuberous Sclerosis can lead to signs of TSC in many different organs of the body. These information pages provide in-depth information about the different signs and symptoms of TSC, recommended surveillance and treatment options.

TAND

Behaviour, learning and mental health

Special issues

Life expectancy in TSC

mTOR inhibitor medicines , including everolimus (Afinitor) and sirolimus/rapamycin (Rapamune)

Financial challenges of TSC

A guide to using Facebook for families with TSC

 

More information

If you need more information, you can speak with the TSA Nurse.  This is a free, confidential information and support service which provides TSC information and links to practical support.  It is run by our nurse Kim, and supported by members of our health professional network and regional volunteers who know what it is like to live with TSC.

Kim is always available on Wednesdays and Fridays each week.

You can book a time to talk with Kim by completing the online booking form on this website.

The TSA nurse can help with:

  • emotional support if you or someone you care about has TSC
  • how to manage life with TSC
  • questions you may have about TSC, including about tests and medical procedures
  • how to find other organisations and resources that can help you in your life with TSC.

TSA also maintains a resource directory full of other online resources and organisations that can help you learn more about TSC and get help for the many challenges life with TSC can bring.