A guide to using Facebook for people living with TSC

Why we have written this guide

We know that many people who have TSC (Tuberous Sclerosis Complex), or care for someone with TSC use Facebook and other social media to connect with others in a similar situation. This may be to ask questions, share the ups and downs of life with TSC or just to make friends with people who may understand the challenges that TSC brings to their lives.

However, interacting with new people online brings some risks. This guide aims to help you understand some of those risks.

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Using Facebook to find out more about TSC

Facebook has a focus on connecting people and this is the reason it is referred to as social media. There are two main ways to use Facebook to find out more about TSC:

Facebook Pages

A Facebook Page is similar to a web page and is intended to be used by businesses and other organisations to share information with the Facebook users that ‘Like’ them.

There is no restriction on this by Facebook and any Facebook user can set up a page.

Some Facebook Pages about TSC that you may find useful include:

TSA – Tuberous Sclerosis Australia

TSC Alliance (USA)

Facebook Groups

A Facebook Group is similar to a discussion forum. You may need to ask to join the Group and be approved to do so. Groups must have at least one owner, but this does not mean that anyone is moderating the information that is posted.

Some Facebook Groups about TSC that you may find useful include:

Some things to be careful of on Facebook and what you can do

Receiving advice

Sometimes the information that others provide on Facebook can be inaccurate or not appropriate to your individual circumstances. This can happen by accident, because of differences between individuals with TSC or simply because people do not have the most up to date information.

What you can do:

  • Get medical advice appropriate to your circumstances before you act on any information you receive online.
  • Check the information you read online either with health professionals you know, or information that has been reviewed by medical professionals, including our information pages.
  • Get a second (or third) opinion. If you are hearing advice from others that contradicts what your doctor is telling you, you may like to seek professional advice from a different doctor. Getting a second opinion is normal practice in health care and usually your doctor will not be offended.

Information from outside of Australia and New Zealand

Health care varies greatly between countries. This is another reason to be careful and critical when reading information online. Differences can include:

  • whether the government or private health insurance fund the health service;
  • the names and availability of medicines;
  • the titles given to doctors with a certain specialty.

What you can do

Protecting you and your privacy

There have been many criticisms of Facebook’s approach to privacy. At the time of writing, Facebook offers two types of Groups: Public and Private. You can read about their privacy settings here.

The group, Discussions of Tuberous Sclerosis in Australia and New Zealand is a Private Group.

What you can do

  • When using Facebook Pages or Groups to communicate with others about personal topics such as health, you should consider who can see the information you post.
  • Consider that Facebook has a history of changing privacy settings with little or no warning. For this reason, some people advise only posting information that you are comfortable with if it were made public.
  • Consider the implications of adding someone as a ‘friend’ on Facebook. If you have not customised your privacy settings, usually this means your ‘friend’ will be able to see most if not all of the information you have shared on Facebook.

Meeting Facebook ‘friends’ in person

TSC affects all types of people, from all over the world, from all walks of life. When you meet someone else who is affected by TSC, you may find that the only thing you have in common is TSC. So meeting up with someone who you have only previously known through Facebook is really just like meeting a  stranger.

What you can do

  • Organise to meet in a public place and take the time to get to know the person before sharing any personal information.

Disclaimer: This guide does not constitute legal or other advice. There are risks when using Facebook or other internet resources. We encourage you to seek medical or other professional advice before taking any action.


Financial supports
Getting the most out of a visit to your GP
Identifying emerging challenging behaviours
In Safe Hands: An introductory guide to TSC for teachers and educators
In Safe Hands: How to be a good advocate for your child with TSC at school
Life expectancy of people living with TSC
New diagnosis parachute packs
Neurodevelopmental disorders in children
Reach Out
Sex and sexuality in young people with TSC
Sleep issues in children with TSC
Transitioning from child to adult care
TSA updates
Tubee children’s picture book about TSC
Useful organisations and contacts
Using Facebook
Video library

Last updated: 5 October 2022