Tuberous sclerosis

Healthcare/Doctors

How do I find a center of excellence in tuberous sclerosis?

The best way to obtain the most accurate, current, clear, and comprehensive information on tuberous sclerosis (TSC) is to be seen at a TSC Center of Excellence. These are genetic centers or clinics that specialize in the treatment of patients with tuberous sclerosis. At most centers, you will see a medical geneticist, genetic counselor, and nurse who work as a team to answer your questions, discuss testing, identify your at-risk family members, and develop a comprehensive evaluation and treatment plan for you. A Center will work with your current doctors to organize the treatment, tests, and specialists you need. The Tuberous Sclerosis Alliance has a listing of TSC clinics in the United States.

References
  • TSC Clinics. The Tuberous Sclerosis Alliance website. http://www.tsalliance.org/individuals-families/tsc-clinics/
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What doctors do I need to see to manage and treat tuberous sclerosis?

What doctors do I need to see to manage and treat tuberous sclerosis?

Rare diseases that affect multiple organ systems like tuberous sclerosis (TSC) can benefit from a multidisciplinary approach. This approach involves healthcare professionals with specialized skills and expertise. They work together to make treatment recommendations and to provide quality care of individuals and families. Depending upon the specific symptoms in an individual, a multidisciplinary team may include:

  • a specialist who can assess and treat disorders of the brain and central nervous system in child (pediatric neurologist) or adults (neurologist)
  • a specialist who can assess and treat disorders of the skin (dermatologist)
  • a specialist who can assess and treat disorders of the kidneys (nephrologist)
  • a specialist who can assess and treat disorders of the heart (cardiologist)
  • a specialist who can assess and treat disorders of the lungs (pulmonologist)
  • a genetic counselor who can help people understand the disease and the implications for the person and other family members
  • psychiatrists
  • social workers
  • other medical professionals

Talk to your doctor about the best specialists in your area to follow an individual with tuberous sclerosis. The Tuberous Sclerosis Alliance has information on TSC Clinics, which are medical centers that specialize in treating this disorder.

References
  • Tuberous Sclerosis. The National Organization for Rare Disorders website. Accessed June 8, 2017. https://rarediseases.org/rare-diseases/tuberous-sclerosis/
  • Northrup H, Koenig MK, Pearson DA, et al. Tuberous Sclerosis Complex. 1999 Jul 13 [Updated 2018 Jul 12]. In: Adam MP, Ardinger HH, Pagon RA, et al., editors. GeneReviews® [Internet]. Seattle (WA): University of Washington, Seattle; 1993-2020. Available from: https://www.ncbi.nlm.nih.gov/books/NBK1220/[/link] Accessed 11JAN2020.
  • TSC Clinics. The Tuberous Sclerosis Alliance website. http://www.tsalliance.org/individuals-families/tsc-clinics/

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