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Tuberous Sclerosis complex also known as TSC due to its complexity of the condition, is difficult to explain because it effects individuals in many different ways and varying degrees of severity. some children and adults with TSC remain largely unaffected and go through life free of symptoms, whilst others who are less fortunate experience one or more of a range of symptoms.

Tuberous Sclerosis is a genetic disorder with about one third of cases having been inherited from parent. There is a 50% risk of someone with TSC passing it to any child they may have, But approximately one third of cases run in families, with the remainder being sporadic.

TSC derives its name from the tuber like growths of the brain which calcify with age and become hard sclerotic. These lesions show up as small white patches on a CT brain scan in most patients with TS. If they have not yet calcified (perhaps) in very young baby, they may not be seen on a CT scan but will on a MR image

Abnormal TS growths can effect almost any other organ of the body including the skin, eyes, heart, Kidney and lungs. but they may cause little in the way of problems. Doctors find them helpful through  confirming the diagnoses.

Early intervention is helping to overcome developmental delays. Advancements in research are bringing new and improved therapeutic options. Surgery to remove tumors or stop tumor growth is helping to preserve the function of affected organs. Technology is pinpointing the exact portions of the brain stimulating seizures and creating new therapies to help control seizures. With every new day we are one step closer to finding improved treatments.

                                                                       

Useful links.

On finding out that my daughter had TSC one of the first things I did was look up personal sites and anything I could find on TUBEROUS SCLEROSIS. below are links I found useful.

Melissa's personal story

TS alliance

Tuberous sclerosis UK

Luke's personal story

Friends of TSC

Treasure street

Family doctor

Arianna

CaringBridge.org - hawkstsstory

                                      

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This site was last updated 06/27/08