If a person is living with TSC and a learning disability, it is essential to proactively consider interventions to improve their daily lives. This could include conversations with different places about the person’s challenges (such as a school) and planning routines and activities or to ensure the person lives a full and varied life.

How common is learning difficulties in people living with TSC?

Around every three in 10 people living with TSC are within the ‘profoundly impaired’ range, whilst around every two in 10 are within the ‘slightly below average’ range. The remaining five in 10 people living with TSC have an intellectual ability that is the same as people who do not live with TSC.

When are cognitive challenges in a person living with TSC diagnosed?

Problems with learning ability may be clear from early childhood. Some children living with TSC appear to develop at a normal rate until the onset of seizures, at which point their development slows or potentially goes backwards. If a child living with TSC continues to have seizures that are not being actively managed or are not responding to treatment (called ‘intractable seizures’) their likelihood of cognitive challenges or reduced intellectual ability increases.

Although people living with TSC and cognitive challenges typically also have epilepsy, many individuals live with TSC and have no significant intellectual disabilities despite also having seizures.