Prognosis

TSC is a genetically and clinically heterogeneous disorder. Each patient will face specific and individual challenges related to the effects that the disease has on them.

Epilepsy will pose the greatest challenge to most patients with TSC. As many as 60% to 90% of patients with TSC will require chronic epilepsy management.[23]​ Medications, effective diet therapies, and surgical approaches can result in good outcomes for many, yet a lifelong and continuing problem will persist for most. This is particularly true for children who have infantile spasms that evolve into more refractory epilepsy.[2][3][26]

As many as 50% to 60% of patients will have cognitive and behavioural problems; these can often be managed with educational and behaviour modification and drug treatments.​[7][40]

Dermatological lesions can be treated with a combination of finely directed laser therapies. This intervention can remove the angiofibromas of the face, and minimise their cosmetic and potentially medically-compromising presence.[2][3][26]

Renal disease will affect many older children and adults, because the progressive nature of angiomyolipomas will be realised in these age groups. Surveillance and non-surgical interventions (selective renal embolisation) can be beneficial in minimising the detrimental effects of specific lesions on renal function and minimising the likelihood of haemorrhage.

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