By Mark Dahl, MD
For the past 20 years, kids with skin diseases have been attending the AAD’s free summer camp, Camp Discovery. What I love most is seeing kids with skin diseases blossom into confident young people.
A camp counselor once told me a story about a camper with alopecia areata who wore a scarf every day to cover her hair loss. On the last day at the waterfront, there was a cannonball contest where campers leapt from a raft into the lake. The camper with alopecia ripped off her scarf and said, “C’mon, let’s get in!” For the counselor, seeing her confidence bloom at camp was awesome.
Heartwarming moments like these began with the founding of Camp Knutson in Crosslake, Minn., in 1993. The camp had an open week. I was president-elect of the Academy at the time, and I saw it as a neat opportunity. I suggested we try a camp for kids with skin diseases, and the AAD Budget Committee agreed to it. The first year, we had 47 campers.
You come to realize how much strength and resilience kids have. They’re heroes.
Camp is open to kids ages 8-16 who have chronic skin conditions and who are referred by their doctors. All expenses are paid, and the camp is fully staffed with volunteer dermatologists and other medical personnel. All kinds of summer activities are available at the camps, For example, at the Minnesota camps, the kids spend a week fishing, boating, swimming, water skiing, and doing arts and crafts, and they also have a chance to meet other kids who are like them.
In its 20th year, Camp Discovery continues to grow. The program now includes six camps in five locations across the United States. Camps are held in Minnesota, Pennsylvania, Texas, Connecticut, and Washington. Last year there were 334 campers and 250 volunteers, including 51 AAD members. This year we have room for 380 campers, after the expansion of one location.
The human element
Being involved with Camp Discovery all these years has helped me see patients as real people. When I’m in the examination room, usually I’m there with the child and his or her parents, discussing the child’s skin condition from a clinical standpoint. It’s easy to forget that when the kids leave the room, they’ll be stared at in the waiting room. They are different. That’s something they deal with all the time. It’s also easy to forget that when kids come to a dermatologist, they really, really hope you can help them. Camp reminds me that our patients are real people pleading for our help and hoping we know they suffer.
Each time I come back from camp, I think about how much strength and resilience kids have. They’re heroes. To go to camp, they have to leave their fathers and mothers and travel to unknown places where they don’t know a single person. And inside, each is thinking that he or she will be the worst-looking kid at camp.
Their parents tell them everything will be fine, but they’ve had bad experiences before. Many have already gone to sleepovers with the assurance from their parents that everything would be fine, only to have their friends stare when they change their clothes. For this reason, a lot of kids refuse to go to camp. It takes a lot of guts to just throw caution to the wind and give it a try. But for the kids who attend, it’s a tremendously empowering experience.
I remember there was a boy who had lamellar ichthyosis who had the courage to ask a girl he particularly liked to go with him to the camp dance only to have her decline because she was going with another boy. “I’ll never have a date,” the boy with ichthyosis said to me. At the dance, I saw the girl push her date away to dance with a lonely girl, and then ask the boy with ichthyosis to dance with her. Kids with skin disease are really sensitive to feelings. I had tears in my eyes, but I think both the girls and the boy with ichthyosis were very happy.
It’s also empowering for the parents to see that their children could enjoy camp despite their conditions. After camp, a lot of parents write us notes about how their kids have changed.
Camp Discovery has also shown me how much our Academy members really care. I’ve been so proud of our members because they’ve really stepped up, being so incredibly generous with their money, time, and enthusiasm. I’m especially impressed with some of our younger doctors who may only have a week of vacation, and yet they give up it up to volunteer for a week of camp.
In addition to volunteering themselves, our members have helped find camp counselors who have skin conditions and are able to provide the kids with advice and support. For example, one of our counselors had epidermolysis bullosa. Several boys talked to him and were amazed and empowered to find he was married, made love, drove a car, and had a job. Until then, they felt that these parts of a normal life would not be parts of their lives.
I wish more members would refer kids for camp. The camp experience is not just for kids with ichthyosis and epidermolysis bullosa. There are so many kids with psychologically disturbing eczemas, nevi, hair loss, vitiligo, hemangiomas, and other skin problems who could benefit from attending. Referring children to camp allows you to treat your young patients in the context of compassion, and bonds you to them.
It’s possible that some doctors hesitate to refer kids with less-severe skin conditions because they don’t want their less severely affected patient to take up the space, but there’s room for everyone.
The bigger camps can lose some of their intimacy, but they also give kids a greater chance of running into other kids like themselves. I remember there was a child with lamellar ichthyosis who said, “I’d never met a person with my skin before.” Another camper summed it up by saying, “I fit in at camp more than anywhere else on earth. Camp is my heaven on earth.” So many kids out there could benefit from this opportunity.
There is still time to register for the 2013 camps. To refer a patient, contact Janine Mueller at the AAD at (847) 240-1737 or email@example.com.
I look forward to seeing the concept spread, because every country should have these camps. Camp Discovery will continue to flourish in the future. There will always be more kids to refer and more people willing to volunteer.
Dr. Dahl is a professor of dermatology at the Mayo Clinic College of Medicine at Mayo Clinic Arizona. He is a part of the AAD’s Patient Advocacy Task Force, is a physician representative in the Coalition for Skin Diseases, and is on the medical board of both the National Rosacea Society and the National Eczema Association.
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