"The mildest patients don't even know they have it," said Marinkovich. "They occasionally get into sports at school or in the Army and do a lot of marching then notice blisters, more than their friends."
The greatest risk is infection.
"They are like walking burn victims," he said. Children with EB have an increased need for calories and protein, just as they deal with sores in their mouths, problems with their teeth and strictures in their esophagus.
"Funding is limited for orphan diseases," said Marinkovich, who is director of Stanford's Blistering Disease Clinic.
"Diabetes and hypertension affect so many people that drug companies are happy to jump in with therapies and make a lot of money. But with EB, if you are able to survive therapy and make it to [research and development] and make it happen, the investment is not going to pay off."
Most of the bridge between basic research and clinical biotechnology is private investors, said Marinkovich. "No investor is interested if you are not going to be profitable, so we have to do it all ourselves or get grants."
Joella Murray, whose mother Kate Murray attended the Senate committee hearing, was born with no skin on her legs. It takes her mother an hour a day to bandage up Joella's blisters.
"I think about the future, where she will go from here," said Murray, 33.
Sometimes wounds can cover up to 75 percent of the body, and can also scar the corneas or tissue in the mouth. Even the friction of eating can damage the esophagus.
Such was the case with Megan Barron, a 19-year-old sophomore at Duke University, who is covered from head to toe with bandages and relies on a feeding tube because of esophageal damage.
"I'm here to come and show support and bring awareness to EB," said Barron, a political science major. "There is a lot of stigma associated with it."
"We tend to write off these children with rare disorders because they don't have much to live for, but as far as I am concerned, this is definitely not the case," she said. "We just want a fair shot at life."
Though Barron can't play high-impact sports like soccer, she is active in the Social Democrats at Duke and helped produce a campus comedy show. "I do as much as I can," she said.
Outbreaks can be caused by stress, warm climates and infection. Any kind of friction can create a blister -- a diaper, an article of clothing, a bed sheet.
For Brandon Joseph of Los Angeles, who has the same recessive dystrophic form of EB as Barron, it was the birth itself. Most of the skin on his hands and feet and parts of his trunk were missing and the newborn was sent to the neonatal intensive care unit.
Not knowing what was wrong, the nurses taped the ventilating tube to his cheek.
"When they took the tape off, it tore his cheek," said his mother, Andrea Joseph, a 44-year-old talent manager. "We were all learning at the same time."
When the doctor finally surmised Brandon had EB, which he found in the medical encyclopedia, the family was stunned at the diagnosis.
"I was in shock," said Joseph. "I had a healthy 9-month pregnancy, but now you are told your child has this disease and there is no cure and no treatment, and you have to bathe in bleach. The first thing that runs through my head was, 'Oh, my God, how will I hold him and bathe him and nurse him?'"