Kim Merkel and Candace Glenn looked at the newborn and saw a challenge.
The baby had a rare form of epidermolysis bullosa, an inherited condition that caused the baby’s skin to be fragile and easily blister. Kim said it was difficult to treat or even hold the baby without causing pain, and many doctors and nurses hadn’t had a large amount of experience with EB before.
“It really hit me, and this is a great place that we can improve upon,” Merkel said.
Merkel, a chief dermatology resident in the College of Medicine, and Glenn, a fourth-year medical student in the College of Medicine, decided to help by recognizing International Epidermolysis Bullosa Awareness Week. During the last week in October, they set up a table by the Sun Terrace with information about caring for those with the condition.
Dona Reynolds, 23, joined them for one day to share what it’s like to live with epidermolysis bullosa. Reynolds receives care in UF College of Medicine’s division of dermatology.
“It’s pretty important because not a lot of people know about it,” Reynolds said. “It’s similar to burns, but it doesn’t go away.”
It starts from birth. A baby is born and the doctors and parents spend a few unnerving moments trying to figure out why the little one seems to be rubbed raw. Then come the bandages. Even the slightest bit of friction will cause a patient’s skin to blister and break, so parents learn to lather their children with Vaseline and bandage them with gauze.
Reynolds goes through about five 13-ounce Vaseline jugs and about 54 rolls of gauze a week, said her mother, Ann Reynolds. It takes 16 hours to change her bandages.
Dona’s mother said she’s thrilled to see people are taking the initiative to help raise awareness about this disease.
“A lot of doctors, nurses, health care people don’t even know about its existence, let alone how to help you with it,” she said. “They have done a great job with what they’ve been doing. It’s a first that I’ve ever come across.”
Volunteers sold cupcakes and lapel pins to raise money for DEBRA, the Dystrophic Epidermolysis Bullosa Research Association of America. They also set out boxes around UF departments where donations of Vaseline products could be dropped. All Vaseline donations were given to epidermolysis bullosa patients that are seen at UF.
“I’m hoping this is just the start of EB (awareness) at UF,” Merkel said.