Background
Mary is the parent of an adult living with a diagnosis of Tuberous Sclerosis Complex (TSC). Through this experience, she became aware of how little was known about the day-to-day lives of people with TSC and their families in Ireland, and how important it was to properly understand their needs in order to improve their care. This concern was reinforced by two audits of TSC care within epilepsy services, carried out in 2022 and 2024, both of which found that care for people with TSC in Ireland was fragmented and inconsistent.
Research
Between October 2022 and January 2023, the team carried out thirty-four in-person interviews with adults living with TSC and with parents of people with TSC, either speaking on their behalf or alongside them.
The interviews revealed just how varied life with TSC can be, no two people’s experience was the same. Alongside real resilience and adaptation, families described an enormous, often invisible burden: uncontrolled epilepsy dominating daily life (“the killer,” as some put it), years-long searches for a diagnosis, schools with little understanding of TSC-related learning and behavioural difficulties, and healthcare services that felt disjointed, with families often left to coordinate their own care. Many said they had become the expert in the room, teaching healthcare professionals about their own condition rather than the other way around.
Potential Impact
The findings point clearly to the need for coordinated, specialist TSC care — building on early steps already underway in Ireland toward a recognised Centre of Excellence — alongside better training for healthcare professionals and holistic support that addresses the health, social, emotional, and financial sides of living with TSC.