Around one in every two people living with Tuberous Sclerosis Complex (TSC) have some signs of the condition impacting on their eyes. However, loss of vision in people living with TSC is rare.

Issues in the eyes for people living with TSC are commonly as a result of TSC-related growths. The growths that can cause problems with the eyes either grow directly in/around the affected eyes or are located in the brain. Eye issues in people living with TSC can also develop as a side-effect from epilepsy treatment.

Generally, growths affecting the eyes are thought to not grow or change over time. Less than half of people living with TSC with evidence of the condition in/around one eye also have it in the other eye.

Treatment is not usually sought for TSC-related eye issues, except in rare cases. Instead, it is recommended that people living with TSC have regular eye examinations to monitor any possible changes in the makeup of their eyes or vision.