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.

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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.

Stories

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

otto-skytte-2
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…

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anneli_2
8 February, 2019

"The best thing about functional alpine skiing is that we can do it together, the whole family!"

In Stockholm we find a ski-loving family. During a ski holiday they discovered sitski and biski - to the daughter…

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projekt-vuxensyskon
28 December, 2018

Grown up siblings share their stories

Growing up with a sibling with a disability is often something that affects a person in many different ways and…

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