Dr. Elizabeth Thiele: Since individuals with TSC can have involvement of multiple organ systems, we need to obtain the best medical care, in order to be very vigilant. That if any of these manifestations occur, they don't compromise an individual's health. What an individual really needs is someone who either has expertise in the various manifestations of TSC, such as one can get in a TS clinic. Or have access to specialized or, either specialists or people who are educated and are aware of the different manifestations and how they affect health. And that integrated approach will change as an individual with TSC ages. So, a child with TSC often needs a neurologist to help control the seizures, often needs a neuropsychologist to optimize the child's development and ability to learn, sometimes needs a cardiologist, if a child has significant heart involvement. And sometimes we'll need a pediatric kidney doctor for the kidney involvement. As that individual ages, those needs change. So adults with TS sometimes needs, sometimes need neurologists, if they continue to have seizures. Frequently need adult kidney specialists, to monitor kidney involvement. Frequently, for the women with TSC, need to have a pulmonologist involved, who's aware of the pulmonary or lung manifestations of TSC, frequently need psychiatrists involved to deal with the anxiety issues, or other mental health aspects of the disorder.
© 2006 The General Hospital Corporation.