Tuberous Sclerosis

What is it?

Rare (1 in 6,000 newborns estimated), multi-system genetic disease that causes benign tumors to grown in the brain and on other vital organs such as: heart, kidneys, eyes, skin and lungs

Commonly affects central nervous system which can cause a combination of issues.

Causes

Defects, or mutations on the two genes: TSC1 and TSC2

Only one gene needs to have the mutation/defect to be present

TSC1 is on chromosome 9 and produces protein called hamartin

TSC2: on chromosome 16 and produces a protein tuberin

Symptoms

Effects different parts of the body so it can cause a variety of signs and symptoms

Is different from person to person on signs and symptoms

Commonly: seizures, cognitive delays, behavior problems and skin abnormalities

Tumors can grown in nearly any organ most common on brain, kidneys, heart, lungs and skin

Wide variety of skin conditions can also occur most don't cause issues

Treatment

No cure

Drugs have been approved to treat benign tumors

Seizure meds would be given if seizures are present or behavior meds for behavior problems

Lifelong condition that requires close monitoring of doctors