New or Suspected Diagnosis of TSC
A diagnosis or suspected diagnosis of TSC (Tuberous Sclerosis Complex) has probably come as a shock to you and your family. These booklets have been written by people that have someone in their family affected by TSC. We hope this information will help you through this difficult time and answer some of your questions.
When you feel ready we encourage you to contact the TSA Nurse via this website or by calling 1300 733 435 (Australia only). This is a free and confidential service where you can speak to a Registered Nurse about anything to do with TSC.
The team at the TSC Clinic at Sydney Children’s Hospital in Randwick, NSW is participating in a multi-centre prospective clinical trial called TSC-STEPS that aims to investigate the safety and effectiveness of early Sirolimus treatment in delaying or preventing seizures in infants diagnosed with TSC. If your baby is between 0 to 6 months old, is diagnosed with TSC, and has no history of seizures, they may be eligible to participate. To find out more, click here.