Direct participant experience

A participant talks about their experience during our study into the treatment of neurocognitive problems in tuberous sclerosis.

Tuberous sclerosis

Tuberous sclerosis (TSC) is a genetic disorder characterized by the development of benign tumors in many organs, including skin, kidneys and brain. Brain involvement is a major concern and can present as seizures, memory problems, and behavioural disorders.

The TRON study

This research study is investigating if the study drug Everolimus is safe and effective for the treatment of difficulties in remembering, learning or thinking quickly and effectively in people who have tuberous sclerosis. Such difficulties are very common in people with tuberous sclerosis, but vary greatly in their severity; not everyone with tuberous sclerosis has these problems.

Studies in people with tuberous sclerosis have shown that Everolimus is effective in treating other complications of the condition, including growths in the brain, but it is not known whether the drug can also help difficulties with remembering, learning and thinking.