Also called: Also called: TSC, Tuberous sclerosis complex
Tuberous sclerosis is a rare genetic disease that causes noncancerous tumors to grow in the brain and other organs. Symptoms vary depending on the location of the tumors. Common symptoms include
- Skin problems, such as light patches and thickened skin
- Seizures
- Behavior problems
- Learning disabilities
- Mental retardation
- Kidney problems
Some people have signs of tuberous sclerosis at birth. In others it can take time for the symptoms to develop. In some people the disease is mild, while in others it causes severe disabilities. In rare cases, tumors in vital organs or other symptoms can be life-threatening.
Tuberous sclerosis has no cure, but treatments can help symptoms. Options include medicines, educational and occupational therapy, dermabrasion, and surgery.
National Institute of Neurological Disorders and Stroke
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Genetics Home Reference: Tuberous sclerosis
(National Library of Medicine) - http://ghr.nlm.nih.gov/condition=tuberoussclerosis
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Tuberous Sclerosis(National Institute of Neurological Disorders and Stroke) - Short Summary - http://www.ninds.nih.gov/disorders/tuberous_sclerosis/tuberous_sclerosis.htm
- What Is Tuberous Sclerosis Complex (TSC)?(Tuberous Sclerosis Alliance) - http://www.tsalliance.org/pages.aspx?content=2
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Questions and Answers about Tuberous Sclerosis Complex(Tuberous Sclerosis Alliance) - http://www.tsalliance.org/pages.aspx?content=117
Also available in Spanish http://tsalliance.easycgi.com/documents/SPANISH%20Questions%20and%20Answers%20about%20TSC.pdf
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Tuberous Sclerosis(National Institute of Neurological Disorders and Stroke) - http://www.ninds.nih.gov/disorders/tuberous_sclerosis/detail_tuberous_sclerosis.htm
Also available in Spanish http://espanol.ninds.nih.gov/trastornos/esclerosis_tuberosa.htm
- Clinical Manifestations of Tuberous Sclerosis(Tuberous Sclerosis Alliance) - http://tsalliance.easycgi.com/pages.aspx?content=9
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Neuroimaging in Tuberous Sclerosis Complex(Tuberous Sclerosis Alliance) - Links to PDF - http://tsalliance.easycgi.com/Fact%20Sheets/Neuroimaging.PDF
Also available in Spanish http://tsalliance.easycgi.com/documents/SPANISH%20Neuroimaging%20in%20TSC.pdf
- Suggested Routine Diagnostic and Surveillance Screening in TSC(Tuberous Sclerosis Alliance) - http://www.tsalliance.org/pages.aspx?content=55
- Drug Interactions and Tuberous Sclerosis Complex: Treatment of Mental Health and Behavioral Issues(Tuberous Sclerosis Alliance) - Links to PDF - http://tsalliance.easycgi.com/documents/Drug%20Interactions%20and%20TSC%20Treatment%20of%20Mental%20Health%20and%20Behavioral%20Issues.pdf
- Epilepsy Surgery for Individuals with Tuberous Sclerosis Complex(Tuberous Sclerosis Alliance) - Links to PDF - http://tsalliance.easycgi.com/documents/Epilepsy%20Surgery%20for%20Individuals%20with%20TSC.pdf
- Making the Most of Your Doctors Visits(Tuberous Sclerosis Alliance) - Links to PDF - http://www.tsalliance.org/Fact%20Sheets/Making%20the%20most%20of%20your%20doctors%20visit.pdf
- Attention Deficit Hyperactivity Disorder and Tuberous Sclerosis Complex(Tuberous Sclerosis Alliance) - Links to PDF - http://tsalliance.easycgi.com/Fact%20Sheets/ADHDnTSC.pdf
- Dental Concerns in Tuberous Sclerosis Complex(Tuberous Sclerosis Alliance) - Links to PDF - http://tsalliance.easycgi.com/documents/TSCdentalInfosheet.pdf
- Epilepsy in Adults with Tuberous Sclerosis Complex(Tuberous Sclerosis Alliance) - Links to PDF - http://tsalliance.easycgi.com/documents/Epilepsy%20in%20Adults%20with%20TSC.pdf
- Epilepsy/Seizure Disorders(Tuberous Sclerosis Alliance) - http://tsalliance.easycgi.com/pages.aspx?content=44
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Heart Manifestations in Tuberous Sclerosis Complex(Tuberous Sclerosis Alliance) - Links to PDF - http://tsalliance.easycgi.com/documents/Heart%20Manifestations%20in%20TSC.pdf
Also available in Spanish http://tsalliance.easycgi.com/documents/SPANISH%20Heart%20Manifestations%20in%20TSC.pdf
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Mental Retardation in Tuberous Sclerosis Complex(Tuberous Sclerosis Alliance) - Links to PDF - http://tsalliance.easycgi.com/Fact%20Sheets/mentalretardation.pdf
Also available in Spanish http://tsalliance.easycgi.com/documents/SPANISH%20Mental%20Retardation%20in%20TSC.pdf
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Renal Manifestations in Tuberous Sclerosis Complex(Tuberous Sclerosis Alliance) - Links to PDF - http://tsalliance.easycgi.com/Fact%20Sheets/renal%20manifestations.pdf
Also available in Spanish http://tsalliance.easycgi.com/documents/SPANISH%20Renal%20Manifestations%20in%20TSC.pdf
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Tuberous Sclerosis Complex and Autism Spectrum Disorders(Tuberous Sclerosis Alliance) - Links to PDF - http://tsalliance.easycgi.com/Fact%20Sheets/TS%20and%20autism%20spectrum%20disorders.pdf
Also available in Spanish http://tsalliance.easycgi.com/documents/SPANISH%20TSC%20and%20Autism%20Spectrum%20Disorders.pdf
- Types of Seizures Affecting Individuals with TSC(Tuberous Sclerosis Alliance) - Links to PDF - http://tsalliance.easycgi.com/documents/Types%20of%20Seizures%20Affecting%20Individuals%20with%20TSC.pdf
- Living with TSC: Independent Living Options(Tuberous Sclerosis Alliance) - http://www.tsalliance.org/pages.aspx?content=63
- Living with TSC: Self-Advocacy(Tuberous Sclerosis Alliance) - http://tsalliance.easycgi.com/pages.aspx?content=64
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Seizure First Aid(Tuberous Sclerosis Alliance) - Links to PDF - http://tsalliance.easycgi.com/Fact%20Sheets/seizure%20first%20aid.pdf
Also available in Spanish http://tsalliance.easycgi.com/documents/SPANISH%20Seizure%20First%20Aid.pdf
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ClinicalTrials.gov: Tuberous Sclerosis(National Institutes of Health) - http://clinicaltrials.gov/search/open/condition=%22Tuberous+Sclerosis%22
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Genetic Testing for Tuberous Sclerosis Complex(Tuberous Sclerosis Alliance) - Links to PDF - http://tsalliance.easycgi.com/Fact%20Sheets/genetic%20test%20for%20tsc.pdf
Also available in Spanish http://tsalliance.easycgi.com/documents/SPANISH%20Genetic%20Testing%20for%20TSC.pdf
- Geneticists-Why Do I Need Them?(Tuberous Sclerosis Alliance) - Links to PDF - http://tsalliance.easycgi.com/Fact%20Sheets/who%20are%20geneticists.pdf
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Genetics Home Reference: Tuberous sclerosis(National Library of Medicine) - http://ghr.nlm.nih.gov/condition=tuberoussclerosis
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Inconclusive Tuberous Sclerosis Complex Genetic Test Results(Tuberous Sclerosis Alliance) - Links to PDF - http://tsalliance.easycgi.com/documents/Inconclusive%20TSC%20Genetic%20Test%20Results.pdf
Also available in Spanish http://tsalliance.easycgi.com/documents/SPANISH%20Inconclusive%20Genetic%20Tests.pdf
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Preimplantation Genetic Diagnosis(Tuberous Sclerosis Alliance) - Links to PDF - http://tsalliance.easycgi.com/documents/Preimplantation%20Genetic%20Diagnosis.pdf
Also available in Spanish http://tsalliance.easycgi.com/documents/SPANISH%20Preimplantation%20Genetic%20Diagnosis.pdf
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Tuberous Sclerosis Moves toward Drug Therapy, Offers Clues to Epilepsy and Autism(National Institute of Neurological Disorders and Stroke) - http://www.ninds.nih.gov/news_and_events/news_articles/news_rapamycin_tsc_mice.htm
References and abstracts from MEDLINE/PubMed (National Library of Medicine)
- Article: Images in clinical medicine. Periungual fibromas. - http://www.ncbi.nlm.nih.gov/sites/entrez?cmd=Retrieve&db=pubmed&dopt=AbstractPlus&list_uids=18815399&tool=MedlinePlus
- Article: Hypothalamic papillary tumor in a patient with tuberous sclerosis. - http://www.ncbi.nlm.nih.gov/sites/entrez?cmd=Retrieve&db=pubmed&dopt=AbstractPlus&list_uids=18724241&tool=MedlinePlus
- Article: Tuberous sclerosis. - http://www.ncbi.nlm.nih.gov/sites/entrez?cmd=Retrieve&db=pubmed&dopt=AbstractPlus&list_uids=18722871&tool=MedlinePlus
- Tuberous Sclerosis -- see more articles - http://www.ncbi.nlm.nih.gov/sites/entrez?cmd=search&db=pubmed&term=tuberous+sclerosis[majr]+AND+english[la]+AND+humans[mh]+NOT+(letter[pt]+OR+editorial[pt])&doptcmdl=summary&cmd_current=Limits&pmfilter_EDatLimit=last+1+Year&tool=MedlinePlus
- Tuberous Sclerosis Complex Clinics(Tuberous Sclerosis Alliance) - http://tsalliance.easycgi.com/pages.aspx?content=17
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National Institute of Neurological Disorders and Stroke - http://www.ninds.nih.gov/
Also available in Spanish http://espanol.ninds.nih.gov/
- Tuberous Sclerosis Alliance - http://www.tsalliance.org/
- Early Years Guide of the Life Stages Program: A Resource Guide for Families of Infants and Young Children with Tuberous Sclerosis(Tuberous Sclerosis Alliance) - Large PDF file - http://www.tsalliance.org/documents/earlyyears%20web%20version.pdf
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Infantile Spasms in Children with TSC(Tuberous Sclerosis Alliance) - Links to PDF - http://tsalliance.easycgi.com/Fact%20Sheets/infantile%20spasms.pdf
Also available in Spanish http://tsalliance.easycgi.com/documents/SPANISH%20Infantile%20Spasms%20in%20Children%20with%20TSC.pdf
- School-Aged Guide of the Life Stages Program: A Resource Guide for Parents of School-Aged Children with Tuberous Sclerosis(Tuberous Sclerosis Alliance) - Large PDF file - http://www.tsalliance.org/documents/schoolagewebversion.pdf
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Subependymal Giant Cell Tumor (SGCT) or Subependymal Giant Cell Astrocytoma (SEGA)(Tuberous Sclerosis Alliance) - Links to PDF - http://tsalliance.easycgi.com/documents/Subependymal%20Giant%20Cell%20Tumor%20SGCT%20or%20Subependymal%20Giant%20Cell%20Astrocytoma%20SEGA.pdf
Also available in Spanish http://tsalliance.easycgi.com/documents/SPANISH%20SEGA.pdf
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Tuberous Sclerosis and Your Baby(American Academy of Family Physicians) - http://familydoctor.org/online/famdocen/home/children/parents/special/birth/496.printerview.html
Also available in Spanish http://familydoctor.org/online/famdoces/home/children/parents/special/birth/496.printerview.html
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Tuberous Sclerosis Complex Information for Teachers(Tuberous Sclerosis Alliance) - Links to PDF - http://tsalliance.easycgi.com/Fact%20Sheets/ts%20facts%20for%20teachers.pdf
Also available in Spanish http://tsalliance.easycgi.com/documents/SPANISH%20TSC%20Information%20for%20Teachers.pdf
- Young Adult Guide of the Life Stages Program: A Resource Guide for Young Adults with Tuberous Sclerosis and Their Families(Tuberous Sclerosis Alliance) - Large PDF file - http://www.tsalliance.org/documents/Young%20Adult%20Guide.pdf
- Brain and Nerves - http://www.nlm.nih.gov/medlineplus/brainandnerves.html
- Genetics/Birth Defects - http://www.nlm.nih.gov/medlineplus/geneticsbirthdefects.html
The primary NIH organization for research on Tuberous Sclerosis is the National Institute of Neurological Disorders and Stroke - http://www.ninds.nih.gov/