Washington University Tuberous Sclerosis Clinic

About Tuberous Sclerosis: Tuberous Sclerosis Complex (TSC) is a genetic disease, occurring in approximately 1 in 6000 live births, that can affect almost any organ in the body, most commonly the brain, eyes, kidneys, heart, lungs, and skin. Symptoms of TSC are primarily due to formation of abnormal growths or tumors in different organs. Although the tumors are usually "benign" (not cancerous), they can cause a variety of symptoms, some of which can be very serious. Involvement of the brain may lead to seizures (epilepsy), developmental delay or intellectual disability, and autism. While TSC is a genetic disease and can run in families, many cases are "sporadic", or without a known family history. Although there is currently no cure for TSC, individuals need to be closely monitored for complications and treated for the various symptoms of this disease. More information on TSC can be found in the accompanying article Tuberous Sclerosis Complex or the Tuberous Sclerosis Alliance website.

About the Clinic: The Tuberous Sclerosis Clinic at Washington University is one of about 25 TSC clinics in the U.S. dedicated specifically to the care of individuals with TSC. The mission of the TSC Clinic is to provide multi-disciplinary comprehensive care of children with TSC and to promote research, education, and awareness about TSC. The TSC Clinic is based in the Neurology Department at Washington University and St. Louis Children's Hospital, focusing on neurological symptoms, such as seizures, developmental problems, and autism. In addition, to address the variety of other symptoms and organs involved in TSC, the TSC Clinic incorporates a multidisciplinary approach collaborating with other Washington University specialty divisions, including Cardiology, Dermatology, Genetics, Nephrology, Neuropsychology, Neurosurgery, Ophthalmology, and Psychiatry. Finally, the TSC Clinic also participates in basic and clinical research in TSC and, in conjunction with the Tuberous Sclerosis Alliance, promotes education and awareness about TSC.

Services offered through the TSC Clinic:
• Initial Diagnostic Evaluation: Comprehensive diagnostic evaluation for TSC, including history, physical exam, laboratory testing, and radiographic studies.
• Follow-up Care: Coordinated care for ongoing medical issues, involving multiple medical specialties.
• Inpatient care at Saint Louis Children's Hospital: for urgent/emergent medical issues.
• Scheduled Radiographic Screening/Monitoring for TSC-related tumors, according to recommended guidelines
• Genetic Testing and Genetic Counseling
• EEG/Video-EEG monitoring for seizure/epilepsy evaluation.
• Treatment of intractable epilepsy and infantile spasms.
• Neuropsychological/Behavioral testing.
• Educational and social support related to TSC, in conjunction with the TS Alliance.

Faculty/Staff: The TSC clinic is directed by Michael Wong, MD, PhD, a faculty member of the Department of Neurology at Washington University. Dr. Wong is a board-certified pediatric neurologist and pediatric epileptologist and also conducts scientific research on TSC, funded by both the National Institutes of Health and the Tuberous Sclerosis Alliance. Multidisciplinary care for individuals with TSC is achieved through direct consultation with allied faculty members in multiple Washington University departments, including:
Dr. Susan Bayliss - Dermatology
Dr. Paul Hmiel - Nephrology
Dr. John Pruett - Psychiatry
Dr. Angela Sharkey - Cardiology
Dr. Matthew Smyth - Neurosurgery
Dr. Larry Tychsen - Ophthalmology