Tuberous sclerosis complex is a genetic disorder that affects approximately 50,000 people in the U.S.
Tuberous sclerosis complex (TSC) can run in families with varying degrees of severity. It affects many organs and may cause non-malignant tumors in the skin, kidney, brain, heart, eyes, lungs, teeth and other organs. It affects individuals of all race and ethnic groups and does not have a gender bias.
The Tuberous Sclerosis Complex Clinic addresses the specific criteria for making a diagnosis and the continued care recommendations for individuals with TSC. Patients have access to physical examination, TAND assessment, diagnostic imaging and genetic testing. It also provides risk assessment and evaluation for other family members, even adults.
The Tuberous Sclerosis Complex Clinic is led by co-directors Danielle Nolan, M.D., a board-certified, fellowship trained pediatric epileptologist and Anne Marie Michon, pediatric epilepsy nurse practitioner. Both specialize in the care of children with
epilepsy, with a focus on underlying genetic etiologies.
The clinic staff includes the following:
- epilepsy nurse practitioner
- nurse coordinator
- board-certified genetic counselor
- medical social worker
The Tuberous Sclerosis Complex Clinic collaborates patient care with other pediatric and adult specialties to include neurosurgery, nephrology, pulmonology, ophthalmology, cardiology and dermatology.