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There are many ways you can help children and their families get the care they need.
If your doctor suspects that your child has tuberous sclerosis complex (also called TS or TSC), you probably have a lot of questions about what to expect and how your child’s condition will be cared for. Our Multi-Disciplinary Tuberous Sclerosis Program at Boston Children’s Hospital combines the expertise of physicians who specialize in treating the various complications that children can experience from having tuberous sclerosis.
Our program is led by child neurologist Mustafa Sahin, MD, PhD, and includes Boston Children's pediatric specialists in Epilepsy, Neurosurgery, Psychiatry, Cardiology, Nephrology, Ophthalmology, Dermatology and Genetics. Each member of our team has special expertise in treating children with tuberous sclerosis. Your child can see all of us at the same location, and we work closely with one another to anticipate our patients’ symptoms and manage them diligently.
We also work closely with you, knowing that your family is a central part of your child’s care team. A nurse coordinator, licensed genetic counselor and educational consultant provide essential support to our patients and their families. And through our Family to Family Program, you can talk with other parents whose children have tuberous sclerosis.
In addition to providing expert care for children with tuberous sclerosis, we are searching for ways to improve treatment. We conduct clinical trials of new drugs, studies of the complications that children experience, and genetic studies to find DNA abnormalities that may contribute to the disease. In addition, Sahin leads a laboratory in which he and his colleagues conduct basic research to better understand the disease and to find new strategies for treatment.
Learn more about our Multi-Disciplinary Tuberous Sclerosis Clinic at Boston Children's Hospital.
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For additional information about our research programs, please contact our study coordinators:
We’re pleased to announce that Boston Children’s Hospital neurologist Mustafa Sahin, MD, PhD, and Darcy Krueger, MD, PhD, of Cincinnati Children’s Hospital Medical Center, have received part of a $100 million grant from the National Institutes of Health as part of the Autism Centers of Excellence. The grant supports their research on tuberous sclerosis complex (TSC). This rare genetic disease causes children to develop benign tumors in their brain and other vital organs and increases their risk of developing autism. Currently, there is no cure for TSC, although there is treatment for the symptoms. Through this project, a consortium of TSC clinics at five pediatric hospitals will recruit infants diagnosed with TSC to track brain development and gain insights into how autism develops.
Our team in the Multi-Disciplinary Tuberous Sclerosis Program is conducting groundbreaking clinical trials of a medication for TSC. Read more in Can drugs improve cognitive deficits in developmental disorders?.
TSC causes medical complications that need close care. But it can also create unique educational needs, and those can often feel the most overwhelming. Our team includes an educational consultant who helps families anticipate their children’s needs, especially during transitions from one stage of education to the next.
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