Tuberous sclerosis is a rare genetic disorder that causes tumors to grow in the brain, kidneys, heart, lungs, skin, eyes, and other organs. Most of these tumors are benign, but they can significantly impact health and development. As a Tuberous Sclerosis Complex Center of Excellence, our specialists expertly diagnose and treat tuberous sclerosis and related concerns in both children and adults. While there is no cure, a comprehensive treatment plan can help improve your or your child’s symptoms and quality of life.
Our Team of Specialists
Tuberous sclerosis complex (or TSC) requires coordinated care to treat the variety of issues it can cause, including developmental delays, autism, and epilepsy. A pediatric neurologist with specialized training and expertise in diagnosing and treating tuberous sclerosis complex serves as your primary point of care. They coordinate treatment with other specialists throughout Duke who are skilled in treating TSC and related concerns. Your care team may include:
Designated Tuberous Sclerosis Clinic
Because tuberous sclerosis tumors often grow in the brain and kidneys, we hold combined tuberous sclerosis clinics so you or your child can see a neurologist and a nephrologist at the same time. People who experience seizures due to TSC may also see an epileptologist on the same day. Doctors will review your medical history and any previous test results, perform a comprehensive physical exam, and recommend additional tests.
Diagnosing Tuberous Sclerosis Complex
Our goal is to make an accurate diagnosis at the earliest possible stage. There are two main ways that TSC is diagnosed.
Testing for Clinical Features
Your medical team may perform imaging scans (ultrasounds, CT scans, or MRIs) or a variety of other tests including EEGs, EKGs, echocardiograms, pulmonary function tests, eye and skin exams, and others to identify features of TSC.
Blood tests can identify genetic mutations that cause TSC. A genetic counselor can explain how the test results may affect other members of your family.
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Treatment and Monitoring
The appropriate treatment for tuberous sclerosis is determined by your or your child’s needs, including where tumors grow in the body, their size, whether they are benign, and how they might affect function, growth, and development. The following treatments may be part of your care plan.
Anti-epileptic medications may be prescribed to control seizures. Other medications may be prescribed to slow tumor growth or to treat conditions that arise as a result of the tumors.
Laser Surgery and Topical Creams
These may be recommended to manage skin issues.
Surgical procedures may help alleviate symptoms. When appropriate, we use minimally invasive options and the latest surgical techniques, such as ablation surgery to treat epileptic seizures.
Long-term monitoring and screening help identify new tumors at the earliest stages, before problems develop. This is especially critical to reduce the risk of neurological complications that may result when tumors develop within the brain.
As a Tuberous Sclerosis Complex Center of Excellence, as designated by the Tuberous Sclerosis Alliance, Duke Health follows clinical consensus guidelines and meets a series of objective measures regarding our commitment to tuberous sclerosis care, relevant medical specialties, availability of resources, and clinical trial participation. It is one of the reasons why Duke Children's Hospital & Health Center is proud to be nationally ranked in nine pediatric specialties.
Why Choose Duke
Tuberous Sclerosis Complex Center of Excellence
Duke is one of only three North Carolina centers recognized as a Tuberous Sclerosis Clinic, and we are the only facility in the state to receive the Center of Excellence designation from the Tuberous Sclerosis Alliance -- a nonprofit professional association dedicated to tuberous sclerosis research and advocacy. This recognizes that we meet clinical practice standards for the highest-quality care of children and adults with tuberous sclerosis. People travel from across the country to seek care at Duke for TSC.
Newest Therapies and Clinical Research
Our specialists stay up to date with ongoing research and the newest therapies for treating complications associated with tuberous sclerosis complex. We participate in clinical trials to discover new and better therapies for managing tuberous sclerosis complex and related conditions.
Epilepsy Specialists for Seizure Management
If you or your child has seizures -- they occur in more than 80% of people with tuberous sclerosis -- epilepsy specialists called epileptologists will be involved in your care. Duke is designated a Level 4 Epilepsy Center by the National Association of Epilepsy Centers, based on our expertise and use of high-tech imaging and surgical techniques.
Transition to Adult Care
Our experts help children make the transition to adult care when they turn 18. This continuity of care ensures your child continues to receive ongoing monitoring and treatment for this lifelong disease.
Duke Children’s Hospital is designated a Level 1 Children's Surgery Center by the American College of Surgeons. This designation recognizes Duke’s commitment to providing the safest and highest-quality surgical care for our young patients. It also recognizes our resources and specialists that are not readily available at many other hospitals.