Hilliard Darby High School students learned firsthand last week the effects of a rare disorder from a 10-year-old girl afflicted with the condition.

Hilliard Darby High School students learned firsthand last week the effects of a rare disorder from a 10-year-old girl afflicted with the condition.

Kristen Mamula, a fourth-grade student at Hoffman Trails Elementary School, and her mother, Susan, visited with anatomy students at Darby on Nov. 24 to discuss a rare disorder, epidermolysis bullosa, known as EB.

The Darby students are selling bracelets to support DEBRA, the Dystrophic Epidermolysis Bullosa Research Association of America.

Dystrophic epidermolysis bullosa is one of three types of EB and it is the type that afflicts Kristen.

An inherited connective tissue disease that causes the skin to be fragile and easily blistered, it occurs once in about every 20,000 births in the United States.

"We didn't know anything about it until Kristen was born," Susan Mamula told the Darby students.

Both Susan and her husband, John, learned they carry the recessive gene that causes the condition, which meant there was a 25 percent chance for each of the couple's three children to have the condition.

The Mamulas have a 12-year-old son, Jake, and a 6-year-old son, Ryan, who do not have EB, but Ryan is a carrier of the gene, Susan Mamula said.

Of the known cases of EB, 70 percent have the "simplex" version, the least invasive. With appropriate management and regimens, those who have this form can lead a reasonably unrestricted lifestyle.

Twenty-five percent have dystrophic EB, which causes the fingers and toes to fuse and the esophagus to narrow. It also carries an increased risk of skin cancer.

Five percent have junction EB and generally do not survive past the age of 2.

EB is not contagious and there is no known cure, Susan Mamula told the students.

While she hopes for a cure, she said she equally hopes researchers will more quickly learn how to better manage its effects.

"I hope there is something someday soon ... to help (EB) kids be more comfortable, to limit the itching," she said.

Bandages that protect Kristen's skin must be changed daily; baths are every other day and require about 90 minutes, Susan Mamula said.

Webbing of the fingers and toes occurs because the skin does not grow with the joints.

Kristen is required to undergo two surgeries each year to keep her esophagus clear and she has lost partial vision in one eye because of corneal abrasions, her mother told the class.

Still, Kristen remains active as a Girl Scout and an aspiring dancer.

"She used to be fearless but she is getting better about watching her surroundings," such as avoiding anyone being nearby who could step on her foot, her mother said.

At Hoffman Trails, she has an aide with her whom Susan Mamula describes as Kristen's "secret service."

"She keeps me safe like crazy," Kristen said of Brandy Alford, a school district employee who accompanies Kristen during her school day.

Kristen also has "lunch buddies" at Hoffman Trails, students who join her and Alford to eat lunch in another part of the school because the bustle of the cafeteria contains too many risks.

Kristen shared some of the things she misses as well as some of her accomplishments.

"I can't go on roller coasters or do cartwheels and back flips ... but I learned to tie my shoes," a skill that many children with her level of EB cannot perform.

Shawn Morris, a teacher at Darby, learned about EB from watching an ESPN segment and told his students about it while the class was studying skin disorders as part of an anatomy course.

The parents of one of his students knew Susan Mamula and the family agreed to allow Kristen to share her story with the class.

"It's remarkable that she is so positive," said senior Steven Joy, 17, who wants to become a physician's assistant.

Madelyn Kucinic, 17, also a senior, whose family is acquainted with the Mamulas, said it was interesting to learn about EB firsthand.