INFORMATION FOR PATIENTS

Tuberous Sclerosis is a rare genetic condition that causes benign tumours to grow in the brain and on other major organs.

What is Tuberous Sclerosis and how does it affect people?

• For an overview of Tuberous Sclerosis, the cause of this disease, how it affects people and further information about the genetics of this disease – please click the following link;
  • Genetics Home Reference – Tuberous sclerosis complex

 How do other people feel and what is their experience?

• Tuberous Sclerosis Australia – Lily’s Story
  • https://tsa.org.au/our-stories/lily-an-inspiration/
• Tuberous Sclerosis Australia – Josh’s Story
  • https://tsa.org.au/our-stories/joshs-story/

Patient Support Groups

• Tuberous Sclerosis Australia
  • https://tsa.org.au/
• Tuberous Sclerosis Alliance
  • http://www.tsalliance.org/

Further Information

• Centre for Genetics Education – Tuberous Sclerosis Fact Sheet
  • http://www.genetics.edu.au/publications-and-resources/facts-sheets/fact-sheet-61-tuberous-sclerosis-complex

More detailed Information for Patients will be available on the ARRK website in the near future.

If you would like to be part of a Disease Specific Research Group (DSRG) for Tuberous Sclerosis, please contact the ARRK registry (arrkregistry1@gmail.com).

The resources on this site should not be used as a replacement for care or advice from your medical doctor. If you have questions about a medical condition or health related issue, please consult your medical doctor or a healthcare professional.

This page was last updated on 15th Oct, 2018.