Tuberous Sclerosis Complex (TSC) is a rare genetic disorder causing tumors to grow throughout the body, typically in the brain, skin, heart, eyes, kidneys, and lungs. While the tumors are benign, they can lead to serious health issues including severe epilepsy and learning and developmental disorders.
Our board-certified pediatric neurologist Dr. Karen Keough is passionate about supporting TSC patients and their families, and she has been the primary neurologist caring for TSC patients in the Austin-area for more than a decade.
Dr. Keough created and manages Child Neurology Consultants’ TSC Program and Clinic. She and our team work tirelessly in support of TSC families to help ease their challenges.
The clinic is designed to provide comprehensive care to patients so that they can be seen by their regular primary care physician while also visiting with Dr. Keough and other TSC support specialists simultaneously (via telehealth). On the day of their clinic visit, families are able to gather together for lunch at CNCA.
Here is more on the local TSC community and clinic program from Dr. Keough:
Why is it important for TSC patients and their families to have extra support/be connected with others in the TSC community?
Tuberous sclerosis is a rare genetic disorder that affects 1 in 6,000 newborns in the United States. Approximately 40,000 to 80,000 people in the United States have TSC. This makes it one of the most common diagnosable causes of epilepsy, because many patients with tuberous sclerosis develop seizures, especially in childhood.
Tuberous sclerosis also affects other organ systems including the kidneys, lungs, skin and heart. The lifelong impact of this diagnosis can be overwhelming for new parents, presenting challenges that vary at every age.
What is the goal of the TSC comprehensive care clinic?
We hope to connect TSC patients and families to allow them to create a supportive community so that they can benefit from each other’s experiences. Patients can find peers who really understand what they are going through.
Dr Keough invested years of effort educating other subspecialists in the Austin community who may not have had much experience with TSC previously. The National TSA (TSC Alliance) created a network of clinics to serve TSC patients and families so that they would have access to specialists who understand this condition. We follow the model of the TSC Alliance in our clinic program.
What are the benefits of TSC patients receiving care tailored to their needs?
Our care model emphasizes proactive treatment to anticipate potential complications before they develop. We implemented the newly-updated clinical care guidelines for TSC that include surveillance tests, and emphasizes education and awareness of the condition. We have started a series of online education programs for families and will continue to provide those opportunities on a regular basis to address the many issues that concern our patients and families.
What else would you like to share about the TSC program?
We hope that by consolidating the TSC clinic at Child Neurology Consultants of Austin into a designated clinic day will provide opportunities for families and patients to build a strong community support network and even innovate new ways to provide them exceptional care.
Child Neurology Consultants of Austin has experience treating a wide range of neurological conditions in children and teenagers from 0 to 21 years old.
To learn more about our TSC program, please call 512.494.4000 or contact us here.