Epidermolysis Bullosa (EB): Shane Digiovanna Fights a Rare Skin Disease
"He loves to learn"
Shane (right) with Dr. Lucky.
As printed in the February 2003 edition of Leaps and Bounds.
Shane Digiovanna requires complex medical care for two conditions -- epidermolysis bullosa (EB) and deafness. Diagnosed at birth, his skin is exceptionally fragile and breaks down and blisters easily. Today, thanks to a cochlear implant for his deafness, Shane has a vocabulary of 1,000 words.
Expert Care for Rare Skin Disease Improves Shane's Quality of Life
When Chuck Digiovanna accepted a position that required moving to Cincinnati, he and his wife Patsy knew they were relocating for a good career opportunity. Finding that their new home also featured an outstanding hospital for their son, Shane, was a great bonus.
Shane, now 4, requires complex medical care for two conditions -- epidermolysis bullosa (EB) and deafness.
Epidermolysis bullosa is a rare genetic disease in which the skin is exceptionally fragile and breaks down and blisters easily. Caring for a baby so vulnerable to skin injury is difficult. Bumps or scratches, rubbing from diapers and clothing, or being lifted in a way that causes friction can cause dangerous blistering.
Shane was 2 when the family moved to Cincinnati and sought out physicians at Cincinnati Children's Hospital Medical Center.
Here they met dermatologist Anne Lucky, MD, whose expertise and commitment to helping Shane live as normal a lifestyle as possible have made a difference in Shane's life. "Dr. Lucky is so knowledgeable about EB and so caring," Patsy says. "In the first 10 minutes she told me so much. If only she'd been there when Shane was born!"
Epidermolysis Bullosa Patients Receive Specialized Care
The goal of treatment for epidermolysis bullosa, Dr. Lucky explains, is to minimize the risk of skin injury and the potential for infection. Shane gets a long bath every day, and Patsy carefully drains his blisters. She applies bandages to injured areas and changes the dressings daily.
Dr. Lucky regularly offers tips to make Shane's skin care easier and safer. She may tell Patsy about a new type of bandage or cream. "She finishes every appointment by asking, 'Now, what can I do to help you?' I always leave with something," Patsy says.
The Digiovanna family has been impressed with the range of services available at Cincinnati Children's, where Shane has seen many specialists. Children with epidermolysis bullosa have heightened nutritional needs to help injured skin heal. Under the supervision of gastroenterologist Michael Farrell, MD, Shane drinks high calorie shakes and gets periodic intravenous infusions of iron.
When he developed tooth decay, dentist Maria Callen, DDS, provided the specialized dental care he needed. She periodically cleans his teeth to minimize future problems.
The Digiovanna family also sought help at Cincinnati Children's for Shane's deafness. Audiologists determined Shane would be a good candidate for a cochlear implant, but would his skin tolerate the implant?
After tests showed it would, otolaryngologist Daniel Choo, MD, performed the operation. Before the implant, Shane spoke just one word. A year later, he has a vocabulary of 1,000 words. "He acquires new vocabulary very quickly," his mother reports. "He loves to learn."
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