Severe dermatological conditions
prove to be no limitation for the
children of Camp Horizon
By Karen Cavaliere Zitomer
Dr. Andrea Zaenglein could not believe her eyes and ears as she watched the fearless 12-year-old on the stage, passionately reciting the lines of Lady Macbeth.As the girl basked in the talent show audience’s standing ovation, Zaenglein remembered when the girl had stepped off the bus only a week before to start her first day at Camp Horizon. Zaenglein had been worried that the girl’s severe genetic dermatological blistering disease would seriously limit her ability to function at the camp. But Zaenglein was soon to discover just how wrong she was.
Over the course of that week, the girl shattered all the concerns that Zaenglein and others had. Even though the repeated blistering of her hands had caused her fingers to fuse together in what is called “mitten deformity,” the girl was able to paddleboat with her friends, tie-dye shirts and “kick booty” in a karate demo.
“In meeting her, I realized that the limitations of these children are what others expect of them, not what they are capable of doing,” said Zaenglein, associate professor of dermatology and pediatrics at the Penn State Milton S. Hershey Medical Center.
This is the greatest lesson Zaenglein has learned working with Camp Horizon. The camp is part of the American Academy of Dermatology-sponsored Camp Discovery program, which offers a summer camping experience to young people with serious skin conditions. Founded in 1993, it is held at three locations under different names across the country: Camp Knutson in Minnesota, Camp Dermadillo in Texas and Camp Horizon, a 35-acre campsite in Millville, Pa., where Zaenglein has volunteered since 1997.
Campers Feel Comfortable
Under the expert care of nurses and dermatologists like Zaenglein, the camps offers participants aged 10–16 the opportunity to spend a week among other young people and even counselors who have similar skin conditions. Campers attend for free, thanks to full scholarships provided by the American Academy of Dermatology.
For many participants, it is the first time they are able to enjoy themselves in a social situation in which they do not need to be self-conscious about their appearance.
“It is also the first time for some of our campers to meet another person with the same skin disorder,” says Annie Houser, director of Camp Horizon. “Can you imagine how that must feel? I have seen lifelong friendships develop over these meetings and sharing of camp experiences.” Houser is also adjunct faculty at Penn State Harrisburg, teaching cultural anthropology in the School of Behavioral Sciences and Education.
After serving as a counselor for her first two years, Zaenglein has been medical director for the past eight years. Because of the unique medical conditions campers have, the medical staff ensures that campers’ medications are administered and that their health care needs are met. Parents and guardians fill out medical forms in advance of the camp so that Zaenglein and her staff can get to know each camper’s needs before he or she arrives.
Zaenglein has seen everything from extreme versions of common disorders such as atopic dermatitis and alopecia areata, a condition that causes campers to lose all of their hair, to severe genetic conditions like the scaling disorders lamellar ichthyosis and epidermolytic hyperkeratosis and the blistering disease epidermolysis bullosa (EB).
Zaenglein says that having a severe skin disorder of any type can be devastating psychologically and socially to a child. “Unlike the vast majority of much more physically severe disorders, skin diseases are visible to everyone. You cannot hide from them. Children as a whole do not like to stand out and be different,” she said.
For this reason, activities at the camp are standard for any summer camp—swimming, biking, fishing, arts and crafts—although there are certainly opportunities for campers to discuss the particular challenges of their skin conditions.
Disease Not the Focus
“There are plenty of informal gatherings and one-on-one discussions regarding individual disorders,” says Zaenglein. “The kids with EB compare pros and cons of specific bandages. The campers with psoriasis may meet with a counselor with psoriasis to discuss how the disease has impacted them when dating. But overall, camp is meant to be a place where the kids come to have fun, where their disease is not the focus.”
Zaenglein says the most rewarding part of her work is that it gives her an opportunity to give emotional support to children whose conditions she cannot cure in her professional capacity. “Most of the disorders that we see at camp do not have great treatments, and there are no cures. Camp is often the best thing I can offer to the child and family,” she said.
Perhaps 12-year-old camper Hannah March sums it up best. Hannah, who has ichthyosis, a very dry, scaling skin condition, has been going to the camp for three years. She said: “I love the environment at camp. You can always feel comfortable no matter what.”
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Dr. Andrea Zaenglein
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