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Tuberous Sclerosis Program

Tuberous Sclerosis Program

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Tuberous Sclerosis Program

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.

Our Providers

Our pediatric specialists provide personalized care for your child’s physical, mental and emotional health needs.

Contact Information

For appointments, please call 1-888-884-BEAR (2327) and for information, call 571-405-5961.

Nationally Recognized Tuberous Sclerosis Expertise

At Children’s National Hospital, 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. Both our program’s director and coordinator have served on the the alliance'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

Dr. Robert Miller Research and Education Week

Provider Resources

Virtual Lunch and Learns

These webinars are part of our continued commitment to bring the latest, most relevant medical news to community providers.

Dr. Robert Miller Research and Education Week

Brynleigh's Story

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.

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