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Dr. Elizabeth A. Thiele

Elizabeth A. Thiele, MD, PhD

Dr. Elizabeth Thiele: Tuberous sclerosis complex is not that rare of a disorder. It affects about one in six thousand individuals, throughout both sexes, all races, internationally. And it's a disorder that can affect most organ systems in the body. Some individuals with tuberous sclerosis are mildly affected, sometimes it's hard to tell they even have tuberous sclerosis unless you do detailed testing. Whereas other individuals with tuberous sclerosis are severely affected, with significant seizure activity, oftentimes very significant developmental difficulty and impairment. Many individuals never learn to walk, never learn to talk. So there's a very wide spectrum. And of all the disorders we take care of and see, it's one of the most difficult. Because it can affect many different organs in many different ways.