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ACCEPTING THE DIAGNOSIS

The diagnosis of tuberous sclerosis complex (TSC) may be made at any point in an individual’s life, young or old. A newborn infant with white spots on her skin may be diagnosed with TSC when she has her first seizure and the tubers in the brain are seen on magnetic resonance imaging (MRI). A gifted and talented 5-year-old with facial angiofibromas may be diagnosed with TSC when his caregiver takes him to see a dermatologist because of the “rash” on his face. An adult may be diagnosed with TSC after his child is diagnosed with the disease.

No matter when the diagnosis comes, it is a diagnosis that can be difficult to understand and accept, and it can be devastating for both the individual and the family. Below are some links that may help in accepting such a diagnosis.


 
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Unlock the Cure: The Tipping Point in the Battle Against TSC
Tuberous Sclerosis Alliance Overview
La Esclerosis Tuberosa (Spanish Intro to TSC)
Infantile Spasms & TSC: A Devastating Diagnosis
Questions & Answers About the TS Alliance


ABOUT TSC
What is TSC?
How is TSC Diagnosed?
Signs of TSC
Genetics of TSC

INDIVIDUALS & FAMILIES
Living with TSC
Family Support
Adult Resources

TSC Connect
Brochures & Booklets
Information Sheets
Life Stages Guides & Personal Journals

Perspective Magazine Archives
TSC Clinics

RESEARCHERS
TS Alliance Grants Program
Other TSC Funding Opportunities
TSC Alert Newsletter Archives
Clinical Trials
TSC Natural History Database
Research Resources
International Scientific Advisory Board

Tuberous Sclerosis Alliance Online CommunityTuberous Sclerosis Alliance Support Community