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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
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
'''Tuberous sclerosis''', (meaning "hard potatoes") is a rare genetic, disorder primarily characterized by a triad of seizures, mental retardation, and skin lesions (called adenoma sebaceum). This "classic" Vogt triad is present in 30-50% of cases; in particular, up to 30% of tuberous sclerosis reportedly have normal mentation. Tuberous sclerosis, along with Neurofibromatosis type I, Neurofibromatosis type II (a.k.a. MISME syndrome), Sturge-Weber, and von Hippel-Lindau disease compromise the phakomatosis or neurocutaneous syndromes, all of which have neurologic and dermatologic lesions. This grouping is an artifact of an earlier time in medicine, before the distinct genetic basis of each of these diseases was understood. The neuropathologic findings of the cortical "tubers" (''sclerose tubereuse'') was first described by Bourneville in 1880. Individuals with tuberous sclerosis may experience none or all of the symptoms with varying degrees of severity. Tuberous sclerosis is a multi-system disease that can affect the brain, kidneys, heart, eyes, lungs, and other organs. Small benign tumors may grow on the face and eyes, as well as in the brain, kidneys, and other organs. Brain imaging studies may be able to confirm the diagnosis. Seizures most often begin in the first year of life. Tuberous sclerosis' acronym is T.S.C. (Tuberous sclerosis complex) so as to avoid confusion with Tourette's Syndrome. May is designated National Tuberous Sclerosis Awareness month.
The Sweetest Sound: The Miracle of Taylor Hess - The Hess family must come to grips with the reality that their daughter has Tuberous Sclerosis.
Team Ninja - DC with a twist - This is the home of Team Ninja, a team that pursues distributed computing projects. We currently work on: Distributed Folding Tuberous Sclerosis Complex (TSC)
The Rothberg Institute: The CommunityTSC Project - Help make drugs to treat patients with TSC, tuberous sclerosis.
Tuberous Sclerosis Association - UK charity supporting sufferers, promoting awareness, and seeking the causes and best possible management of this genetic disease. Resources for patient families and information on this condition.
Tuberous Sclerosis - Lisa's Site - An incurable genetic condition that causes tumors to grow in various places in the body.
Children's Hospital Medical Center of Cincinnati Tuberous Sclerosis Program - Organized in 1993 to assist in the medical care of children and adults with tuberous sclerosis.
Tuberous Sclerosis Hub - A brief definition of, followed by links to overviews, research articles, case reports and images.
Tuberous Sclerosis - A short information sheet on this disease compiled by NINDS, the National Institute of Neurological Disorders and Stroke.
Kolten's Tuberous Sclerosis Page - Kolten's story about living with this disease. The daily seizures that took over his life and the amazing surgery that gave it back to him.
National Library of Medicine - A list of synonyms, a summary and major features of tuberous sclerosis.