'We've made the best of it. But we do not have a normal life': families' experiences of tuberous sclerosis complex and seizure management.

There are exciting developments with respect to scientific understanding of the pathophysiology of TSC, which opens opportunity for new treatments. Holistic family centred health care and practical support (e.g. opportunities for parental respite) is as important as medical intervention. As TSC is such a complex condition, there is a need for specialist clinics and TSC-specific research.