Cutaneous manifestations-associated with tuberous sclerosis complex and the use of topical rapamycin in the United States: a sub-analysis of an international survey of caregivers and patients

In patients with cutaneous manifestations, a higher frequency of other TSC manifestations was observed. Presence of cutaneous manifestations impacted the quality of life of more than half of the responders. Surgical removal of cutaneous manifestations and compounded topical rapamycin treatment for the management of facial angiofibroma were reported. Compounded topical rapamycin use for the management of facial angiofibroma was reported as moderately effective or very effective by most of the responders.