Epidermolytic hyperkeratosis

At a Lutheran camp, youth with severe skin diseases feel accepted

Imagine never being able to go to the beach, the park, or even for a simple walk without getting stares, questions and rude comments. That's what daily life is like for kids with serious skin diseases. And that's why a place like Camp Knutson is so important.

Located near Cross Lake, Minn., Camp Knutson is a Lutheran Social Service of Minnesotaowned facility for children with special needs. Each summer it hosts various camps-within-acamp for children with HIV/AIDS; for inner-city kids and moms; for deaf children; and for kids with autism. But it's the children and teens with dermatological conditions (at two weeklong sessions called Camp Discovery), who are particularly memorable, many staff members say.

"The first time I worked with Camp Discovery kids, I was absolutely moved by them," says Anna Mason, a St. Olaf College (Northfield, Minn.) student who spent two summers there as a counselor. "Even kids who were covered from head to toe with bandages or used a wheelchair were regular kids who laughed and got absorbed in camp activities. And yet they were also such amazing human beings, so full of life."

Just to ride on a pontoon boat or sit around a campfire unself-consciously is a big step for these kids, most of whom struggle with social isolation every day of their lives, says camp physician Julia Winfield. "They tell us over and over again that they are treated so differently out in the world-not accepted, stared at, excluded. Here they are accepted and make lifelong friends," she says.

Or as camper and junior counselor Shauna Egesdal of Eden Prairie, Minn., puts it: "All we believe in at Camp Knutson are compliments. No putdowns are allowed." As for the friendships she's formed in six years at camp, she laughingly says it's a good thing e-mail is so prevalent because the long-distance phone bills she would otherwise incur wouldn't make her parents too happy.

The transformation in these youth that takes place throughout the week is astounding to behold, Winfield says. "They get off the plane with their hats on, long sleeves, baggy clothes, looking down;' she says. "After a couple days at camp they're talking and laughing," wearing swimsuits and shorts, and doing all the things kids usually do at camp.

Trying new activities, especially physical ones such as swimming, is an important part of Camp Discovery for the kids, many of whom have been closely monitored by parents and schools since birth.

Shauna, for example, has a condition called epidermolytic hyperkeratosis, a scaling and thickening of the skin. Her skin is quite fragile and she must be careful not to cut or scrape herself. But at camp, like most of her buddies there, she not only swims but water-skis, goes tubing, rides horses and attends dances and carnivals.

"We try to make it as much a traditional camp experience as possible," says Rob Lane, the program and development director. As Shauna puts it, "It's a place where we can be normal."

Winfield says two doctors and two nurses work at Camp Discovery at all times, a necessity since some campers require up to five hours of medical treatment per day. But while the demands on her as a physician are undeniable, Winfield also spends plenty of time sailing, swimming and playing with the children. The most important thing, she says, is that "everyone is there for the same reason: to make this a wonderful week for the kids."

Shauna, for one, has always had a terrific time, says her mother, Alicia. "Her whole demeanor has changed since she started attending camp," she says of Shauna, now a volleyball- and softball-playing high school sophomore. "She went that first year from being very shy to wanting to ride the bus home [with all her new friends]. She's come out of herself more every year since. Just to have that solid week of having no one downgrade Shauna for her appearance-that lasts for the rest of the year."

Few summer camps can claim to do so much.

Resources

Camp Knutson: Former U.S. Rep. Harold Knutson donated the land for this camp to the Lutheran church in 1953. He designated it as a camp for disadvantaged children. For more information, contact Rob Lane, Lutheran Social Service of Minnesota, 2485 Como Ave., St. Paul, MN 55108, (800) 582-5260 or www.lssmn.org.

Matching support: Lutheran Brotherhood members can have gifts of $25$100 to Camp Knutson (or other Lutheran camps and retreat centers) matched through LB's Outdoor Outreach program. Contact: (800) 328-7168.

Other Lutheran camps: To learn about the 140-plus outdoor ministries, see www.elca.org/dcm/camps. Search for camps by state and find service and high-adventure outdoor ministries.

Lamb, a free-lance writer, is a member of University Lutheran Church of Hope, Minneapolis.

Copyright Evangelical Lutheran Church in America Jul 2000
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