Tuberous sclerosis complex (TSC), a genetic disorder that affects 1 in 5,000 individuals, can affect many organs in the body, including the brain, heart, kidneys, lungs, and skin. TSC is a lifelong genetic disorder and condition in which complications and symptoms can arise at any time for patients. The most effective means of providing treatment and medical/clinical care that benefits each individual child is to use a team approach at the tuberous sclerosis complex clinic.
Established in 2015, the TSC Clinic brings together various specialists in one location so that TSC patients can be cared for and seen by several specialists in a single visit. This tuberous sclerosis complex center treats and follows children into adulthood. Team members for TSC patients include a pediatric neurologist, nurse manager, pediatric cardiologist, pediatric nephrologist, pediatric dermatologist, genetic counselor, and social worker. In addition, the team works closely with specialists in pediatric epilepsy, neuropsychology, neurosurgery, ophthalmology, and pulmonology. The clinic has been approved as a TSC Center by the Tuberous Sclerosis Complex Alliance, a national organization that fosters education, awareness, and research on this genetic condition.
For more information, please visit the Tuberous Sclerosis Complex Alliance at www.tscalliance.org
Tuberous Sclerosis Complex Clinic Team
Our multidisciplinary TSC Clinic team includes:
Anuja Jindal, M.D., M.P.H., Director; Pediatric neurologist and specialist in neurodevelopmental disabilities
Marsha Harp, R.N., Nurse manager
Maria Coronel, Administrative Coordinator
Beth Printz, M.D., Pediatric cardiologist
Noureddin Nourbakhsh, D.O., Pediatric nephrologist
Dawn Eichenfield, M.D., Ph.D., Pediatric dermatologist
Sophia Ceulemans, M.S., LCGC, Genetic counselor
Kyla Murphy, Social worker
Research
Research is an important part of the TSC Clinic, with a focus on developing a better understanding of TSC and how to treat affected organ systems. The clinic has been one of the study sites for a multicenter trial of the drug everolimus for the treatment of intractable epilepsy in TSC and collaborates with other TSC centers around the country.