CHICAGO (FOX 32 News) - It’s called Epidermolysis Bullosa, or EB.
Children who suffer from EB have extremely fragile skin, much like the wings of a butterfly. There’s no cure and no effective treatment for the painful condition, but there is hope.
Now, pediatricians at Lurie Children's Hospital are researching innovative new therapies for children who suffer from EB.
Meet 3-year-old Charley Kauf. She’s a fun-loving little girl who suffers from the very painful condition known as EB.
"It's very painful, but we are managing," said Charley’s mom Brooke Kauf
But simply managing is a struggle for little Charley and her mom.
"It’s hard to see her in pain. As soon as you take the bandage off, she starts scratching. The healing of the blisters is itching, a lot of scratching," Brooke said. “In order to protect her skin, we do daily dressing changes that last about 2 hours."
Every aspect of Charley's life is affected.
"She has to eat soft foods. She has to chew slowly, cause it can affect the esophagus," Brooke said.
There is no cure for EB, but there is hope in the form of a new crème being studied at Lurie’s.
"The results were promising. Now there is a second study that is international. It tries to look at the benefits and risks of putting this crème on children with blisters that are not healing for at least 3 weeks or more," said Dr. Amy S. Paller.
Charley's been in the study for over a year.
"The crème is working great for her,” Dr. Paller.
It provides faster healing, and not as much inching and scratching. Less pain means more time for little charley to do other things, such as pick up a new toy.
"She's a strong girl," Brooke said.
The study is open to anyone with EB ages 6 months to adulthood. Final data from the latest test trial in march is expected sometime early next year.