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Dr. Elizabeth A. Thiele

Elizabeth A. Thiele, MD, PhD

Dr. Elizabeth Thiele: In addition to the major organ systems that are affected, several other organs can be affected with TSC and people can develop these hamartomas or these unusual growths of cells in several organs, the liver, the pancreas, the intestines. We don't think that they frequently, if ever, cause an individual any symptoms or problems related to them, so we typically do not follow those. In addition to growths like that, there are other things that people with TSC seem to get more frequently than the normal population. One is dental pits. So dental pits are pits in the enamel of your permanent teeth. Most of us have a few. People with tuberous sclerosis have many more. We don't know if that has any significant impact on their dental hygiene, but we often recommend that people with TSC do get their teeth coated, if there are a lot of pits, with the concern that they could increase the risk of cavities in the teeth. In addition, people can get cysts in their bones, which often also are asymptomatic. Sometimes they're just picked up on x-rays done for other reasons and we don't believe that there's a significant risk or affect on your health, overall health if you develop these bone cysts.