Eddie Caine's feet hurt.
The 12-year-old, who suffers from a rare genetic disease that causes painful, recurring blisters, wears triple layers of socks in his sixth grade class in Springfield to protect his sensitive skin.
His parents, forced to rely on their own ingenuity to try to help their son, use surgical needles to drain the blisters, and apply Krazy Glue to his tender soles as a temporary protective "skin."
At bedtime, a jury-rigged ironing board rod holds the blanket away from Eddie's body. The touch of the cover hurts.
"Believe me, it hasn't been easy," sighs Eddie's father, Stephen Caine, 40, a Gs-13 civilian engineer with the Navy.
Eddie Caine's parents have suffered, too -- concerned that their son is among the estimated 5,000 persons in the United States with an uncommon, inherited illness called Epidermolysis bullosa (EB), frustrated that treatment is scanty and a cure unknown.
"All of Edward's life we have been trying to help him, and find other parents we could share our anguish with," says his mother, Marilyn, 37. "We had to figure out for ourselves how to help him, because most of the doctors we talked to only told us he had EB, not what we could do about it."
So the Caines learned by trial and error how to puncture the blisters, and bought special soft-sided sneakers to minimize the pain.
"It's something I'm stuck with," said Eddie recently as he rested in bed, organizing stacks of bubblegum, playing cards. "I guess I'm lucky compared to other people my mom has told me about."
In its most common form, the disease affects skin on the hands and feet, raising blisters that must be opened and carefully cleaned to avoid the threat of infection. A more severe, even rarer form of EB causes body sores, a wib-like matting that grows over the victims fingers and can cause death.
For the Caines, the first hope that something more could be done for Eddie and others like him has come about only recently.
Today they will host what had seemed to them in recent years an impossible dream -- a meeting of parents and professionals concerned about EB. The meeting, the first in the mid-Atlantic states and only the second in the United States, is scheduled at their ranch-style home at 8806 Skyron Pl. in Springfield.
The meeting is precisely the type of activity that one U.S. official says is needed to bring changes in the field.
"Every group has to toot its own horn," says Dr. Laurence Miller, a grants director of the National Institutes of Health's skin disease programs. "Currently only about $10 million is being spent on research into all skin diseases, including EB. By contrast, the entire NIH research budget is almost $3.2 billion."
"Angry parents, especially mothers, can achieve a great deal," he adds.
Marilyn Caine, a Brooklyn-born housewife, is not so much angry as she is determined to help her son lead a better life, and pass on the practical knowledge she has gained to other parents.
"I've had to hurt my son in order to help," she said, frowning at the memory. "Sometimes when he was a baby I couldn't hug him, because I was afraid of causing the blisters to erupt. When he said he was going to play soccer, my heart sank.But he's the most courageous person I know."
Marilyn Caine first realized that something was troubling her son when he was 1 year old, and a pinhead sized blister on his foot kept growing larger and larger. "It was almost the size of a golf ball. At first I thought it was the white walking shoes I had bought him, his first pair. The doctors didn't know what it was," she said.
Caine let Eddie move around the carpeted house without shoes, but whenever he walked the blisters appeared, she said. A pediatrician soon diagnosed it as EB, "but he didn't tell me what to do about it, except make him comfortable, she said.
According to Dr. Allen Gaisin, a dermatologist who now treats Eddie, EB is caused by too much collagenase in the skin, an enzyme that dissolves the cells of the skin whenever too much friction is applied. In the case of Eddie and thousands of other people like him, that excessive friction can be caused by walking.
"So I developed techniques of my own to help him," Marilyn Caine said. "I wrapped his feet in gauze in the morning, and then soaked him in a warm bath at night to dissolve the gauze. To tear it off would have hurt him. He cried enough as it was."
Last fall she learned for the first time of a new organization of parents concerned about EB. Called DEBRA, for Dystrophic Epidemolysis Bullosa Research Association, it aims to increase public awareness of EB, and encourage the study of its causes, possible cures, and ways parents can help their children. The 200-member, New York-based group also wants to bring together adults who have EB so they can form a "support group" for each other, according to Arlene Pessar, a Brooklyn nurse who heads the group.
"For years I didn't know anyone who had EB in their family," Marilyn Caine said."Now several dozen people who have EB or whose children have it will come to my house on Saturday. I think we're on our way."