Tuberous sclerosis (internationally known as TSC) is a rare, multi-system genetic disease that causes benign tumors to grow in the brain and on other vital organs such as the kidneys, heart, eyes, lungs, and skin. TSC is caused by defects, or mutations, on two genes (TSC1 and TSC2). In rare cases, the disorder can be inherited. However, most cases occur as sporadic cases due to new, spontaneous mutations in those genes.

Shop for a #inclusivefutureGet 10% off with the code: OURNORMAL10The code is entered in the check outTo the shop >

TSC can appear in different forms – from less complex to very complicated. For people with the less complex form, barely visible skin changes can be the only sign and it might not even be discovered. In the more difficult forms, eyes, kidneys, heart and lungs are affected in addition to the skin. TSC can cause epilepsy, developmental delay, autism or autistic behaviour and ADHD. More than 50% of people with Tuberous sclerosis also get psychiatric symptoms.

However, it is important to point out that Tuberous sclerosis has very large individual differences – and the combination of symptoms differs greatly. Therefore, it is important that all support and habilitation efforts are directed individually to each one’s specific set of needs, as well as strengths and abilities.


Here we share some interviews, stories and other interesting stuff for families with special experiences.

20 March, 2022

Families share their views on their experiences with the Swedish health care system

Families within the Our Normal network have shared their views on how they are being met by the Swedish health…

Read more
17 July, 2019

“Sigge shows us something new everyday that he has learnt in school.”

In this article, Ida tells us about her son Sigge’s year in preschool class. It was a long process to…

Read more
10 February, 2019

“The best thing with air rifle shooting is that you feel like a hunter!”

Next up in our series about leisure activities, Johanna tells us about her son Otto's air rifle shooting. A perfect…

Read more

Create your family profile and become part of the community today! It is absolutely free to join.

Create profile

Become a part of a supportive family network!

Creating an account is quick and easy, and completely free of charge. Your profile page can only be viewed by other members. Become a part of the community in order to connect with other families, or to be there as a support for others!

Read more

Never miss out on our updates

Submit your e-mail to receive our newsletter. (We promise to only send relevant updates, and not too often! You can choose to unsubscribe anytime you like.)