Tuberous Sclerosis Program Contact number | 571-405-5961

Tuberous sclerosis (also referred to as tuberous sclerosis complex or TSC) is a relatively rare genetic disorder that causes tumors to form in various organs, including the brain, eyes, heart, kidney, skin and lungs.

The true prevalence (the number of cases) of TSC is unknown, but its incidence (new cases) is estimated at 1 in 6,000 live births. This means approximately 50,000 individuals in the United States and more than 1 million worldwide have TSC. It occurs in both sexes and in all races and ethnic groups.

Nationally Recognized Tuberous Sclerosis Expertise

At Children’s National Health System, we are dedicated to providing advanced, compassionate and individualized care to children with tuberous sclerosis. With consistent care, many of our patients have a good quality of life and a normal life expectancy.

Features of the Tuberous Sclerosis Program at Children’s National include:

  • Nationally recognized TSC leaders. Children’s National has one of the few tuberous sclerosis programs recognized by the Tuberous Sclerosis Alliance (TSA). Both our program’s director and coordinator have served on the TSA’s Professional Advisory Committee for more than 20 years. We also were one of five initial comprehensive clinics to open in the United States more than 23 years ago.
  • Care from childhood to adulthood. We not only treat children with TSC, we also continue to provide consultation with primary care physicians and some outpatient services for our patients into adulthood.
  • A team approach to caring for your child. We bring together physicians from many specialties, so patients and families can be evaluated and advised comprehensively on the same day by all members of the care team. Children with TSC may have associated conditions or complications. Our multidisciplinary program ensures that TSC patients have access to all the necessary specialists to manage their specific condition.

Services We Provide

While tuberous sclerosis is a lifelong condition that requires ongoing management, many patients enjoy a fulfilling, active life when they receive proper treatment. Our team offers several treatments and services to patients with tuberous sclerosis, including: 

  • Education
  • Medication management
  • Occupational therapy
  • Psychological therapy
  • Surgery

Support Group

A TSC support group meets in conjunction with clinic dates. All family members and caregivers are welcome.  

Helpful websites

Contact Us

For more information about our Tuberous Sclerosis Program, call us at 571-405-5961.


Brynleigh's Story

Brain Nervous System

brynleigh teaser

Two and a half years ago, Adamstown, MD residents Lauren and Sean Shillinger gave birth to a beautiful little girl named Brynleigh. Brynleigh was their first child, and Lauren experienced a full-term pregnancy and a normal delivery. But when Brynleigh was just 9 1/2 months old, Lauren and Sean started to notice something unusual in Brynleigh’s behavior.

Brynleigh's Story

Tuberous Sclerosis Program Team

In This Section:

Locations

We see children from around the Washington, DC, area, nation, and world who need the specialized expertise and child-focused care we offer.

Meet the Team

Our providers represent medical and surgical specialties, family practice, and general pediatrics.

Related Care Services

Pediatric specialists work closely to ensure an integrated approach to caring for each child and family.

Resources for Providers

Children’s National Health System values the network of referring physicians and staff and offers resources for medical education and referring patients to Children’s National.