Individuals & Families

Additional Resources for Adults with TSC

Helpful Links

Wego Health Sharing Hub — TSC: Education and Engagement
Bender Consulting Services (Consulting firm that specializes in recruiting and hiring people with disabilities for full-time, competitive employment opportunities)
Social Security Benefits Guide

Educational Videos

Personal Biographies

Why Do You Have Red Freckles: Growing Up & Living with Tuberous Sclerosis – Written by Deborah Farber
My Personal Story About TSC – Written by Brooke Simsa
My Life Story – Written by Heather Lynn Nixon

Publications

Life Stages Guides

The Life Stages Guides were developed by the TSC 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.

The Young Adult Guide of the Life Stages Program (ages 14-21)
The Adult Years Guide of the Life Stages Program (ages 21 and

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.

Tuberous Sclerosis Complex Adult Journal – An organizational diary for care and treatment

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 TSC 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

How to Talk to Your Healthcare Professional — A publication from the TSC Alliance with tips on how to effectively communicate with those who provide your healthcare.
Questions to Ask Your Healthcare Provider — A publication from the TSC Alliance with suggested questions you should ask your doctors as well as a list of the different types of physicians sometimes needed in TSC care.
Agency for Healthcare Research and Quality — Website to help facilitate better communication between patients and physicians.

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: