Tuberous Sclerosis

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Information for Patients


Lung Information for Patients

How is Tuberous Sclerosis Complex Diagnosed?

In 2012, the International Tuberous Sclerosis Complex Consensus Conference reviewed prevalence and specificity of TSC-associated clinical manifestations and updated the TSC diagnostic criteria from 1998.   Clinical features of TSC continue to be a principal means of diagnosis but include additional clarification and simplification.  In addition, TSC may now be diagnosed via genetic testing.

Signs and Symptoms of TSC

Because TSC affects no two people the same, there is no sure way to predict where and how the disorder will manifest throughout the body and a patient’s lifetime.

TSC Treatment Guidelines

This table provides guidelines to help patients and caregivers manage the treatment of TSC.  

Consensus Guidelines for the Diagnosis, Treatment and Management of TSC

The diverse and varied presentations and progression of TSC are a challenge for optimal health care management with significant impact on cost and quality of life.  This page for physicians and other healthcare providers provides a brief summary of the latest consensus recommendations for monitoring and treating individuals with TSC.


ATS Breathing in America Book

The Breathing in America: Diseases, Progress, and Hope compilationbriefly describes respiratory diseases and the progress that is being made in the quest to find their cures.