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.
TSC-STEPS research trial in Australia
TSC-STEPS is a multi-centre prospective clinical trial that aims to investigate the safety and effectiveness of early Sirolimus treatment in delaying or preventing seizures in infants diagnosed with TSC. It is being run by the team at Sydney Children’s Hospital in Randwick, NSW but participation is open to anyone in Australia. TSA is helping to fund participation expenses for members of its TSC Community. 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.