About Our Program:

The Tuberous Sclerosis Clinic at Kennedy Krieger Institute is one of about 25 clinics in the United States dedicated specifically to the care of individuals affected by tuberous sclerosis complex (TSC) and their families. Occurring in an estimated one in 6,000 live births worldwide, TSC is a genetic disorder that causes non-cancerous tumors to form in many different organs, including the brain, eyes, heart, kidney, skin, and lungs. Signs and symptoms of the condition vary from person to person. As a result, TSC may be unrecognized or misdiagnosed for years.

Who We Serve:

We provide expert care for children, adolescents, and adults who experience conditions associated with TSC. Although we place special emphasis on the identification and treatment of autism, intellectual disability, anxiety, ADHD, self-injury, and aggression in individuals with TSC, our clinic treats anyone with the disorder, as well as their families.

Our Approach:

TSC varies dramatically in severity, so our treatment model emphasizes unique care regimens tailored to each patient.

When patients first arrive in our clinic, they receive an initial evaluation by our expert physicians and therapists. In some cases, additional testing may be required to determine the extent of the condition. These tests may include:

  • CT scan/MRI of the head
  • Genetic testing
  • Ultrasound of the kidney
  • Ultraviolet light examination of the skin

Depending on individual need, further care may include medical or rehabilitation services offered at Kennedy Krieger, or referral for surgical intervention. Follow-up care typically occurs every three to six months.

Although there is no cure for TSC, quality care from experts who understand the condition is key to helping individuals successfully manage symptoms, overcome obstacles, and unlock their potential to succeed in family, school, and community life.

Our Team:

Our clinic includes an interdisciplinary team of health care professionals who are trained and experienced in treating and managing patients with TSC. This interdisciplinary approach is specifically designed to care for TSC patients with multiple medical needs and complexities.

We provide a comprehensive evaluation to ensure a thorough examination of each patient's unique needs.

Our interdisciplinary specialists include the following disciplines:

  • Assistive Technology
  • Behavior Psychology
  • Child Neurology
  • Child Psychiatry
  • Educational Services
  • Epilepsy (Surgery)
  • Genetic Counseling
  • Neurogenetics
  • Neuroimaging
  • Neurology
  • Neurophysiology
  • Neuropsychology
  • Occupational Therapy
  • Pediatric Cardiology
  • Pediatric Dermatology
  • Pediatric Epileptology
  • Pediatric Nephrology
  • Pediatric Neuro-Oncology
  • Pediatric Ophthalmology
  • Physical Therapy
  • Sleep
  • Social Work
  • Speech Language Pathology

Research and Collaborations:

The Institute's clinical care is driven by its ongoing research, which ensures that patients receive the most innovative therapies available. Physicians in the Institute's Tuberous Sclerosis Clinic are committed to improving the lives of patients and families with TSC through designing and participating in existing research studies, both clinical and pre-clinical. Current research efforts are aimed at using MRI technology and biomarkers to determine why some individuals with TSC experience severe symptoms, while others experience only mild symptoms.

Related Materials and Information:

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