Below are resources especially for adults with tuberous sclerosis complex (TSC). You can download and read the publications using Adobe Acrobat Reader. Click here to go to Adobe's Web site to download a free version of Adobe Acrobat Reader if needed.
Read the TS Alliance's Adult Initiative Plan.
If you want to connect to another adult with TSC, please contact an Adult Regional Coordinator in your area.
Are you an independent or semi-independent adult with TSC? If so, please join us for our free informational calls.
If you have questions or would like to receive handouts (if available) before each call, contact Dena Hook at email@example.com or (800) 225-6872.
To participate in any of the following free informational calls, use the toll-free call in number: 1-866-613-5223 then enter access code: 4334003#. Each call's length is one hour starting at 8 p.m. Eastern, 7 p.m. Central, 6 p.m. Mountain, 5 p.m. Pacific.
- February 6, 2014: Family Planning, presented by Kimberly Parker-Menzer, ANP-BC, GNP-BC, NYU TSC Clinic
- March 20, 2014: Depression, presented by Lorna Myers, PhD, Northeast Regional Epilepsy Group, Hackensack, NJ
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.
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
I'm an Adult with TSC -- Diagnosis and Community
Anxiety in Adults with TSC
Sleep Issues in Adults with TSC
How to Talk to Your Healthcare Professional -- A publication from the TS Alliance with tips on how to effectively communicate with those who provide your healthcare.
Questions to Ask Your Healthcare Provider -- A publication from the TS 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.
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:
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
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.
The Young Adult Guide of the Life Stages Program (ages 14-21)
The Adult Years Guide of the Life Stages Program (ages 21 and above)
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
Anxiety and Cognitive Behavioral Therapy for Adults with TSC (Power Point)