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Daily baths soothe boy's 'special skin'

CHICAGO -- Frank Osowski of Mokena, Ill., noticed something was wrong with his son's skin the moment he was born. "It looked like it was pulled off and blistered. ... Some places seemed raw, (others) seemed very hard. It didn't look like my daugh...

CHICAGO -- Frank Osowski of Mokena, Ill., noticed something was wrong with his son's skin the moment he was born. "It looked like it was pulled off and blistered. ... Some places seemed raw, (others) seemed very hard. It didn't look like my daughter's did, the only other (baby) I had to compare to."

Ben Osowski, now 5, was born a few days before Thanksgiving -- not a time when hospitals typically teem with specialists who could make a diagnosis. Ben was treated much like a burn victim, Frank said. He was coated with salves and moisturizers and wrapped in gauze. Frank and his wife, Jacklyn, were shown how to take care of their baby so they could spend the holiday at home.

A few days later, Ben was diagnosed with a type of ichthyosis, a group of more than two dozen disorders in which skin cells grow too quickly and/or their shedding is impaired. Signs of the disease vary depending on the type, but dry, scaly, flaky and hardened, thickening skin are common. ("Ichthy" means fish in Greek.) The skin can be itchy or painful.

The ichthyoses, as the group is referred to, are genetic; some people inherit a mutation from one or both parents, others have what's known as a spontaneous mutation, meaning their DNA has undergone a change during development.

The most common type, ichthyosis vulgaris, affects about one person in 250. Its hallmarks are scaly legs, especially in the winter, and increased lines on the palms, according to Amy Paller, MD, professor and chair of dermatology at Northwestern University's Feinberg School of Medicine.


Ben has epidermolytic hyperkeratosis, or EHK, a spontaneous form of ichthyosis that affects about one person in 300,000. Because some types of the disease are rare, doctors don't always recognize it. Osowski says he has met people who weren't diagnosed until their 20s or 30s, although ichthyosis typically presents at birth or within a child's earliest years. Its severity ranges widely too; those with milder cases may believe they simply suffer from dry, flaky skin.

But more severe forms can affect not only appearance but also vision, hearing and the ability to sweat and therefore to regulate the body's temperature. Affected skin can crack, causing pain. Bacterial and fungal infections are a risk, explained Paller. "As you can imagine, it severely impacts one's quality of life," she said.

There is no cure, only management of symptoms.

"In the milder forms, we can do miracles using peeling agents, such as lactic acid and retinoids, in addition to moisturizers," said Paller. More severe forms may require oral formulations of retinoids, "and even that may not be enough to help sufficiently with cosmetic appearance."

Recent research has been identifying the genetic defects that cause different forms of ichthyosis. In time, that should mean new and more targeted treatments.

Ben, who just graduated from preschool, knows he has "special skin." He soaks in the tub up to an hour a day with an entire box of Vaseline Intensive Care bath beads with vitamin E or aloe. During the bath, Jacklyn rubs mineral oil on Ben's scalp to keep it from drying out, and afterward applies a thick lotion to his skin.

Some days and weeks are better than others, but the family has learned to anticipate the different phases Ben's skin seems to go through. "There's lots of trial and error," said Osowski.

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