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Epidermolysis Bullosa

Epidermolysis bullosa is a rare, but potentially deadly, skin condition that occurs in only 29 people per million. It’s a condition in which skin is so sensitive, that it blisters at the slightest touch.


Newborn Luis Sorto is afflicted with the condition. His mother cannot even hold him because his skin is so sensitive. Doctors have installed a feeding tube in his abdomen because his mouth and esophagus are blistered, as well.


Luis underwent a groundbreaking procedure Thursday that may save his life, as CBS 2's Paul Moniz reports. Pediatric dermatologist Ted Daly of Nassau County Medical Center donated his time to help the child, grafting six pieces of genetically engineered skin, called apligraf, to the diseased areas in the hope that the new skin will teach the boy's own skin to behave normally.


Doctors say there is tremendous potential for this genetically engineered skin, which is already being used on leg ulcers and diabetic foot ulcers. The skin comes from the foreskins of newborns and bovine collagen and works best on diseased skin, because it is too thin and shiny to be used for cosmetic purposes.


At Nassau County Medical Center Thursday morning, Luis' mother suited up in scrubs to observe the cutting edge procedure.


After covering the boys hands, feet and the area around the feeding tube, Dr. Daly seemed pleased with the results.


"I'm happy with the left hand but the right hand was a lot tougher," he says. "We'll have to wait to see how that does."


The blistering skin condition can be deadly or resolve on its own. The condition can be hereditary: Luis' mother also had it as a child, but it cleared up in her teenage years.


Still, pain and infections pose serious risk: before the skin graft procedure, sufferers relied on topical antibiotics and were often left deformed.


Doctors say Luis' new skin should last eight to 11 months, after which he'll need more artificial skin. They hope he will crawl and live normally until he can outgrow the condition.


Dr. Daly says he's already received calls from as far away as Puerto Rico to have this procedure done.

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