NEWLY DIAGNOSED WITH TUBEROUS SCLEROSIS COMPLEX (TSC)?
The Tuberous Sclerosis Alliance is Here to Help . . .
You just received the diagnosis of tuberous sclerosis complex or TSC. Your next question may be — now what? The Tuberous Sclerosis Alliance (TS Alliance) is here to assist you, to offer you hope, to provide information and to direct you to resources that may be helpful to you in your journey, whether you are 50 years old or your child is 5 days old.
The first thing to understand is that TSC is a very complex disease that can be very overwhelming. Try to focus on the issues affecting your life right now.
Remember: TSC affects all individuals differently, so what you might read about one person and how TSC impacts his or her life may be quite different from how it impacts your life.
Another thing to remember is that different aspects of TSC affect an individual’s life at different times. For example, you may be concerned about the heart tumors in a newborn baby who has just been diagnosed with TSC, but a person in his or her 40s may only need to be concerned about the kidney tumors.
What Is TSC? is a good place to begin learning about the basics of the disorder. The booklet, In Their Own Words: Personal Journeys with TSC, features first-person stories about children and adults living with TSC.
In addition, this website is packed full of information so spend some time browsing the different sections or use the Search function on the top right of each web page. For example, our Information Sheets section includes articles on a variety of issues related to TSC and an eMedicine article on the disorder.
The TS Alliance is here to support you every step of the way and in any manner we can. But remember:
“It is reported that more than 90% of what we worry about never happens. That means that our negative worries have less than a 10% chance of being correct.” — Susan Jeffers