Why we have written this guide

computerWe know that many people who have TSC, or care for someone with TSC use social media to connect with others in 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 on line brings some risks. This guide aims to help you understand some of those risks.

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

Using Facebook to find out more about Tuberous Sclerosis

Facebook is just one way to use the internet. Other information on the internet can be on websites, discussion forums, email lists and many other technologies.

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 Tuberous Sclerosis:


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 setup a page.

Some Facebook Pages about Tuberous Sclerosis that you may find useful include:

Tuberous Sclerosis Australia

Tuberous Sclerosis Alliance (USA)


A facebook group is similar to a discussion forum. 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 Tuberous Sclerosis that you may find useful include:

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

Receiving advice

Sometimes the information that others provide on facebook can be inaccurate or not appropriate to your individual circumstance. 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 before you act on any information you receive on line.
  • You can 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. You may like to contact us for this reason.
  • 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. Differences can include:

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

What you can do

This is another reason to be careful and critical when reading information online. You may like to contact us for up to date information about services offered in Australia.

Protecting you and your privacy

There have been many criticisms of Facebook’s approach to privacy. For some detailed examples, you may like to read this wikipedia article.

At the time of writing, Facebook offered three types of groups: Open, Closed and Secret. You can read about their privacy settings.

The group, Discussions of Tuberous Sclerosis in Australia and New Zealand is a Closed group. Although this means that only group members can see posts in the group, anyone on facebook can see members of the group and possibly see news about group activity in their news feed.

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 people in real life

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 Tuberous Sclerosis, you may find that the only thing you have in common is TSC.

So meeting up with someone in real life with whom 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 personal information.