Individuals & Families

Additional Resources for Adults with TSC

Helpful Links

More Resources


 

Educational Videos

 


 

Personal Biographies


 

Publications

Life Stages Guides

The Life Stages Guides were developed by the TS Alliance resource information to individuals with TSC and their families and/or caregivers for many of the non-medical frequently experienced from infancy to adulthood.

Adult Journal

Because the treatment of tuberous sclerosis may involve a variety of health care professionals, it is very useful to have a working system to track ongoing medical care and treatment. This journal was specifically designed to provide you with an organized way of keeping accurate records of medications, procedures, appointments, therapies, surgeries, tests and manifestations.

 

Additional Support Materials

Finding a Doctor

If you have just been diagnosed with tuberous sclerosis complex (TSC), are moving to a new location, or are a young adult with TSC who is no longer eligible for pediatric care, finding a doctor who is knowledgeable about TSC may be very difficult so the TS Alliance developed an online guide to help you.

Insurance 

It’s important to ensure your healthcare insurance meets your needs.  Please refer to this special information sheet, Be Aware of Changes to Your Healthcare Insurance, for more inforrmation.

Communicating with Healthcare Professionals

Family Support

Tuberous sclerosis complex (TSC) affects every member of the family, not just the person with the disorder. This section is dedicated to the siblings, parents and other family members of people with TSC and their need for understanding, information and support.  Following are some resources to help:

PowerPoint Presentation