Most of these manifestations do not cause life-altering problems. However, facial angiofibromas do continue to grow throughout this part of the lifespan and can become painful and cause recurrent bleeding concerns and rarely, nasal airway obstruction. First-line treatment recommendation focuses on mTOR inhibitor treatment. In 2022, the FDA approved the first topical rapamycin gel for those diagnosed with facial angiofibromas. Ungual fibromas (lesions that grow in your fingernails or toenails) can also increase during adulthood. If those become problematic or bothersome, surgical removal can be completed by a dermatologist.
At this time, there is not sufficient research or literature to support retinal changes that occur in the aging adult with TSC. Therefore, it is recommended to continue to have annual ophthalmic evaluations to assess for visual impairments. If you or your loved one experience a sudden loss of vision of any sort, double vision, blurry vision or a sudden onset of significantly elevated blood pressure, you should notify your local medical team immediately.
As with the eyes, teeth manifestations are another area that has not received much longitudinal surveillance from a research standpoint. We do know enamel pits remain an issue throughout the lifespan, so having your dentist preventively utilize sealants to minimize tooth decay is appropriate every 6 months. It is important to know oral fibromas can occur near the teeth or within the bony jaw, and these should be treated with surgical excision or curettage when present.