A Mysterious Rumanian May Have the Cure for a Terrible Skin Disease
05/17/1982 AT 01:00 AM EDT
05/17/1982 AT 01:00 AM EDT
"I went through hell when Ricky was born," Karen Tummillo says. Her son's body was covered with so many sores and blisters that, she recalls, he looked "like eight and a half pounds of ground meat." Later scar tissue grew over his fingers, forming mittens of skin. In the 13 years of Ricky's life, his mother has tried every treatment medical science knows—and a few it doesn't, such as I smearing him with "St. Jude's oil" bought by mail from a romance magazine. Nothing worked.
Ricky Caruso (Karen divorced his father and has since remarried) suffers from a rare skin disease, epidermolysis bullosa, or EB. Ricky inherited it; neither of his parents has the disease, but the doctors say they carry it genetically. The Brooklyn-based Dystrophic Epidermolysis Bullosa Research Association of America (DEBRA) estimates at least 10,000 Americans have the condition, which causes blisters to form at the slightest touch. At its worst, the disease fuses the throat closed; life expectancy usually is no more than 30. There is no known cure.
But last year Karen heard about Pavel Kozak, a secretive Rumanian researcher who has been treating EB with what seems like miraculous success in a private clinic in Michelbach, West Germany. She and Ricky left for Michelbach in February. Today, after eight weeks of treatment, Ricky is back home in Chicago. His face is, for the first time in his life, clear of blisters. His left thumb has unfused. It is too soon to know whether this improvement will be permanent, but Karen says, "I feel like Ricky has been reborn."
Little is known about Kozak's controversial treatment, except that he uses salves made from Vaseline jelly, steroids and antibiotics, and a diet that mandates celery and parsley roots, rice, lettuce, freshly slaughtered meat, chamomile tea and vitamins. To break up the menu monotony, Kozak's wife bakes yogurt birthday cakes and cookies tailored to the diet. Kozak, 50, says he stumbled upon the treatment while looking for a cure for eczema, which hospitalized him for four years when he was 19. After 17 years of research into skin diseases, Kozak, who is not a doctor, attended a dermatology convention in Canada in 1979 to tell of his EB "cure," but he refused to divulge exactly what it was.
Then he defected from his native Rumania, complaining that his homeland and its doctors ignored his achievements. He settled in West Germany in 1979, opened a clinic in Homburg, and nine months ago moved to his Vital Klinic in a refurbished hotel about 22 miles from Frankfurt. Kozak says he has treated 50 EB patients in Rumania and another 50 in his German clinics with uniformly positive results.
The orthodox medical community remains skeptical but curious. "If Pavel Kozak has got something wonderful, for heaven's sake he has got to share it with the scientific world," pleads Dr. Nancy Esterly, head dermatologist at Chicago's Children's Memorial Hospital. She has treated Ricky Caruso since he was 2 months old and, after examining him on his return from Germany, said, "Ricky looks better than I have seen him in years. His skin is smoother, he has less redness." But she cautions, "The proof will be whether Ricky maintains his improved state and becomes even better."
Canada has tried to lure Kozak with almost $1 million to set up a university-run, doctor-supervised clinic. Kozak has been reluctant. "Without the possibility of having a private clinic I will not move from Germany," he says. The head of the planned Canadian project, Dr. Colin Ramsay, a Toronto dermatologist, says of Kozak's patients, "There is little doubt that they have improved. We have been charged with finding out the scientific reason for this improvement." (In the U.S., the chairman of DEBRA's medical advisory board, Dr. Eugene Bauer of St. Louis, testified recently before the House Appropriations Committee in Washington, pleading for increased funding for EB research.)
Still, Dr. Roger Pearson, an EB expert from Rush Presbyterian St. Luke's Medical Center in Chicago, suggests Kozak's patients could be responding to intensive care and bed rest rather than his diet. Medical officials in Saarland, the German state where Kozak's first clinic was located, meanwhile are investigating reports that he overcharged patients for treatments that proved ineffective.
Kozak takes about 20 patients at a time for two-to-three-month treatment. Most are children; many have blisters so severe they cannot walk. Every three to five hours, nurses or parents wash patients' skin with alcohol, then apply lotions and bandages. Patients eat food with no preservatives, drink mineral water and take multiple vitamins.
There are success stories. Nancy Daley of Newburgh, N.Y. says her 3-year-old twins used to have blisters the circumference of pancakes; now they can wear shoes for the first time. Edris Colpitts of Moncton, N.B., Canada said her son, Keir, 16, had blisters that all but closed his throat for six years. He has to be fed through a tube. But at Kozak's clinic, Keir managed to eat bread and porridge. "I know I'm better," says Gloria Burke, 24. "This is the first time I've gone without a wheelchair. I had to come to Germany to go to a disco for the first time."
Kozak's treatment can be expensive. DEBRA estimates public fund raising in the U.S and Canada has totaled $1 million to send some 35 patients to Kozak. Burke paid her $35,000 bill with contributions from people around her hometown of River Hebert, N.S., Canada. Patients and parents complain about costs (a minimum of $12,000 a month) and an understaffed nurse corps. But the complaints don't diminish the gratitude. "Pavel Kozak is not a charlatan," says Ricky's mom, Karen. "I would do anything for that man." Kozak himself insists her son will be 100 percent normal if he follows his diet and continues with salves on his skin. Best of all, Kozak says, "Ricky can smile."