- What is tuberous sclerosis complex and what causes it?
- What are the symptoms of tuberous sclerosis complex?
- How is it diagnosed?
- What is the prognosis?
- What is the risk for other family members or future babies?
- What treatments/therapies/medications are recommended or available?
- How will my child and our family be impacted?
- Why does my child have tuberous sclerosis complex (TSC) when nobody else in our family has ever had it?
- Why does my doctor want to use vigabatrin which may cause vision loss for my baby's seizures?
- My child needs glasses; is this because of TSC?
Why does my child have tuberous sclerosis complex (TSC) when nobody else in our family has ever had it?
Tuberous Sclerosis Support Group (dailystrength.org)
Online discussion group specific to TSC; requires account creation, subsidiary of Sharecare, Inc., a for-profit corporation.
Tuberous Sclerosis Alliance Support Community
An online support community for individuals and families affected by TSC; sponsored by Inspire.com - membership required.
TSC Community Alliances (TSAlliance.org)
Locations of volunteer groups who work with the TS Alliance to facilitate local connections for individuals and families affected by TSC.
National Organization of Rare Disorders (NORD)
Provides advocacy, education, and other services for people affected by rare diseases.
Tuberous Sclerosis Alliance
Information about TSC and access to online communities, supports, and research.
Tuberous Sclerosis (Genetics Home Reference)
Excellent, detailed review of the condition for patients and families; sponsored by the U.S. National Library of Medicine.
Tuberous Sclerosis (Medline Plus)
Overview with links to reliable sources of more detailed information; from the National Library of Medicine.
Tuberous Sclerosis Information Page (NINDS)
Overview of TSC with emphasis on research and inclusion of links to studies and clinical trials; National Institute of Neurological Disorders and Stroke.
Tuberous Sclerosis (GARD)
Information about TSC and additional resources for patients and families; Genetic and Rare Diseases Information Center.
Tuberous Sclerosis (Disease InfoSearch)
Lists scientific articles, clinical trial, support, and advocacy networks related to TSC; compiled by the Genetic Alliance.
Living with TSC (MGH)
Presents information, family stories, research results, and an interactive timeline illustrating the clinical features of TSC through life stages; Massachusetts General Hospital.
The LAM Foundation
Nonprofit organization that offers information, resources, and grants for research. The Healthcare Providers tab on the top of the page provides clinical diagnosis and management information. Other tabs provide information and resources for families affected by LAM and TSC.
An Introduction to TSC (Tuberous Sclerosis Alliance) ( 2.1 MB)
A 32-page booklet that provides information about diagnosis, features, genetics, and support systems for families affected by TSC.
See all Autism Treatment/Behavioral Specialists services providers (12) in our database.
See all Behavioral Programs services providers (19) in our database.
See all Developmental Pediatrics services providers (22) in our database.
See all Early Intervention Programs services providers (13) in our database.
See all Neuropsychology services providers (3) in our database.
See all Occupational Therapy, Pediatric services providers (6) in our database.
See all Pediatric Cardiology services providers (16) in our database.
See all Pediatric Dermatology services providers (1) in our database.
We currently have no Pediatric Genetics service providers listed; search our Services database for related services.
See all Pediatric Hematology/Oncology services providers (11) in our database.
See all Pediatric Nephrology services providers (6) in our database.
See all Pediatric Neurology services providers (22) in our database.
We currently have no Pediatric Neurosurgery service providers listed; search our Services database for related services.
See all Pediatric Ophthalmology services providers (1) in our database.
See all Pediatric Pulmonology services providers (6) in our database.
See all Physical Therapy services providers (4) in our database.
See all Preschool/Early Childhood Education services providers (4) in our database.
See all Psychiatrist, Child-18 services providers (116) in our database.
See all Psychologist, Child-18 services providers (7) in our database.
See all Speech/Language Therapy services providers (7) in our database.
For other services related to this condition, browse our Services categories or search our database.
Clinical Trials/Studies Related to TSC (TSAlliance.org)
A list compiled and maintained by the Tuberous Sclerosis Alliance with clinical trials and clinical studies that have obtained Institutional Review Board approval.
Tuberous Sclerosis (clinicaltrials.gov)
A list of trials registered with the National Institutes of Health; some may be of interest and might offer opportunity to participate in research.
|Compiled and edited by:||Lynne M Kerr, MD, PhD - 11/2012|
|Content Last Updated:||1/2016|
Krueger DA, Northrup H.
Tuberous sclerosis complex surveillance and management: recommendations of the 2012 International Tuberous Sclerosis Complex Consensus Conference.
Pediatr Neurol. 2013;49(4):255-65. PubMed abstract / Full Text
Evidence-based, standardized approach for optimal clinical care provided for individuals with tuberous sclerosis complex.
Northrup H, Krueger DA.
Tuberous sclerosis complex diagnostic criteria update: recommendations of the 2012 international tuberous sclerosis complex consensus conference.
Pediatr Neurol. 2013;49(4):243-54. PubMed abstract / Full Text
Key changes compared with 1998 criteria are the new inclusion of genetic testing results and reducing diagnostic classes from three (possible, probable, and definite) to two (possible, definite). Additional minor changes to specific criterion were made for additional clarification and simplification.