Tuberous Sclerosis Complex

Tuberous sclerosis complex is a rare genetic disorder that is characterised by the growth of benign tumours in the brain, kidneys, lungs, skin and other organs.  

Symptoms of the disorder include epilepsy, kidney problems, intellectual disabilities and facial angiofibroma, requiring specialist teams in the management of the condition to address the various organ systems affected.  

The tuberous sclerosis clinic at Sydney Children’s Hospital, Randwick, comprises a multi-disciplinary group including a neurologist, nephrologist, geneticist, genetics clinical nurse consultant, dermatologist and developmental paediatrician with an extensive knowledge of tuberous sclerosis and its complications.

The team are heavily involved in research and clinical trials to bring the latest innovations in TSC to their patients, including mTOR inhibitors (rapamycin and everolimus) and specialist anti-epileptics including cannabinoid derivatives.