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Tuberous Sclerosis May Be More Prevalent Than Previously Thought

Tuberous Sclerosis May Be More Prevalent Than Previously Thought


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Dr. Kim Mulvhill reporting Doctors believe an incurable genetic disease may be more prevalent than currently reported.

Little Adam Abad started having seizures about a year ago.

Mario Abad, Adam's Father: "It was quite dramatic and it got progressively worse it started with one a day to six a day"

Doctors discovered Adam had tiny tumors growing inside his body - including in his eyes, and in his brain.

Siti Abad, Adam's Mother: "You don't want to wish on anybody, especially a child. I still have problems talking about it."

Dr. Candy Brown at Children's Hospital Oakland has seen this before.

Dr. Candy Brown, Pediatric Neurologist: "Its really quite common more common than people realize"

Adam has a rare genetic disease called tuberous sclerosis. It's just as common as Lou Gerhig's disease, but few people have ever heard of it.

According to the National Institutes of Health, Tuberous sclerosis (TSC) is a rare genetic disease that causes benign tumors to grow in the brain and on other vital organs such as the kidneys, heart, eyes, lungs, and skin. It commonly affects the central nervous system. In addition to the benign tumors that frequently occur in TSC, other common symptoms include seizures, mental retardation, behavior problems, and skin abnormalities. TSC may be present at birth, but signs of the disorder can be subtle and full symptoms may take some time to develop.

Mario Abad, Adam's Father: "We were shocked we didn't know what to think" Siti Abad, Adam's Mother: "I was very sad, very concerned for his future"

Dr. Brown is an expert in tuberous sclerosis.. She says while the tumors are benign..they can still grow and attack multiple organs at the same time.

Dr. Candy Brown, Pediatric Neurologist: "It''s a lifelong disease and you have to follow them lifelong to try to prevent complications as they occur "

In fact, the hospital opened up a special clinic.

Dr. Candy Brown, Pediatric Neurologist: "It's so hard for them to have to see six, seven doctors a year and clinic is to make it easier for them. In one clinic if they take care of the child he is not so stressed out and the parents aren't so stressed out as well."

There is no cure. And while treatments can help, a lot is still not known about the disease.

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