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
For those needing instant help, the TS Alliance employs a full-time staff member who offers a wide range of support. Dena Hook, Director of Advocacy and Education, is available to answer any questions you may have and to provide you with resources and information. If you have questions or concerns, call Dena at 1-800-225-6872 or 301-562-9890 or email her at firstname.lastname@example.org.
The TS Alliance provides you with many resources so you do not have to face this alone. We sponsor more than 30 volunteer branches of the TS Alliance called Community Alliances throughout the USA.
These Community Alliances provide opportunities to get involved on the local level and to meet and interact with other individuals with TSC and their families. Community Alliances extend a hand to families and individuals in their local area and make available expert speakers who discuss everything from dermatological treatments, to horseback riding therapy, to the latest research on treatments for kidney involvement.
Community Alliances are paving the way for the future and bringing the TS Alliance closer to those affected by TSC. Click here to find a Community Alliance near you.
The TS Alliance's TSC Connect program (formerly the Support Network and Matching Program) is an organized partnership of individuals whose lives have been affected by tuberous sclerosis complex (TSC). The volunteers are committed to offering support and sharing their experiences with others who are faced with the challenges of TSC.
Across the nation, TSC Connect is providing the latest medical information, education and support to those individuals who are seeking understanding about the genetic disorder and offering them words of encouragement and empowerment. Volunteers come to the network with a wealth of knowledge, awareness and experiences.
TSC Connect is designed to connect individuals either by specific geographical area, manifestations, or age of TSC individual, and lets volunteers choose the issues they have personal experience with and are willing to discuss with others. If you are looking for a TSC Connect volunteer in your area please contact Dena Hook at 1-800-225-6872 or email@example.com.
The TS Alliance Support Community connects individuals, families, friends and caregivers for support and inspiration. This online discussion format is sponsored by the TS Alliance in partnership with Inspire.
You can also connect to others online via several Social Networking Sites maintained by the TS Alliance, including FaceBook,YouTube and Twitter.
It may be difficult to tell members of your family about the TSC diagnosis. To help, you may download this letter to explain TSC to others.
The TS Alliance recognizes more than 30 medical practices in the United States as TSC Clinics, each one directed by a physician who is a member of the TS Alliance Professional Advisory Board and knowledgeable about TSC.
TSC Clinics provide access to other board-certified physicians and allied health care professionals with experience caring for individuals with TSC. To locate a TSC Clinic near you, click here.
Some clinics are located in a children’s hospital and are unable to provide services to individuals over 18 years old. Please contact Dena Hook at 1-800-225-6872 or 301-562-9890 or email her at firstname.lastname@example.org if you are an adult with TSC who needs help locating an adult specialist in your area.
The TS Alliance is just that: an alliance -- of those who have the disease, of those who have a family member or friend with the disease, of those who are caring for or treating someone with TSC, of those who are trying to find new treatments and a cure. Simply put, the TS Alliance is powered by people -- people from all walks of life, people from all over the country, people just like you.
The journey of TSC can certainly be daunting; many people say having TSC is like walking through a minefield, because you never know when another symptom will arise. But you can rest assured the TS Alliance and our volunteers will always be available when you need information, support or just a sympathetic ear.