PracticalDermatology

There’s a lot that medical residents learn from textbooks, medical journals, didactic lectures, at the bedside, and in the clinic. However, there are some lessons that can’t be captured in any book or PowerPoint deck, including what it really feels like to live each day with a rare, severe, chronic disease, especially if you are just a kid, who just wants to be—a kid.

This is one of the many life lessons that dermatology residents Drs. Catherine Brahe and Austin Park learned when they spent a week volunteering at Camp Wonder. Staffed with volunteer physicians, residents, nurse practitioners, and nurses along with numerous other non-medical volunteers, Camp Wonder is a free summer camp program for children ages 7 to 16 with serious chronic skin diseases including epidermolysis bullosa, pemphigoid, vitiligo, atopic dermatitis, ichthyosis, ectodermal dysplasia, and Gorlin Syndrome. Camp Wonder was founded by the Children’s Skin Disease Foundation and is supported by Galderma.

“I thought we are going to see things that I might not see in residency because these diseases are so rare, but it was much more of a human experience than a clinical one,” says Dr. Parks, a dermatology resident at the Naval Medical Center San Diego. “It is humbling how much you can learn about diseases from people who have them that you don’t find in textbooks, and this knowledge can enrich how you care for these patients when you see them in the clinic.”

The same is true for Dr. Brahe, also a dermatology resident at Naval Medical Center San Diego. “I felt energized when I came back,” she says. “This experience will make me a better doctor, for sure,” she says.

“When you are working in one place, like the hospital or clinic, things can get monotonous” says Dr. Brahe. “It’s easy to get burnt out when we’re just churning through clinic. You get maybe 15 minutes with your patients, and in that time you have to evaluate, diagnose, come up with a plan…and then move on to the next in line. We do what we can, but that structure can really lead to burnout and fatigue,” she says. “The week I spent at Camp Wonder helped to regenerate and renew me. Instead of being frustrated by short staffing, prior authorizations, clinic admin, or formulary limitations, I was reminded why we are here in the first place [and] why I went into medicine: to connect with and help people with disease.”

Lessons Learned

“Apply to affected areas” is not as simple as it seems. Applying moisturizers, medicated ointments, lotions, and sunscreen can take hours depending on the disease and its extent. On top of extensive dressing changes and wound care, many of the campers at Camp Wonder require medications in the morning, throughout the day, and at night before bed.

As part of their volunteer duties, Drs. Brahe and Park helped to check in campers when they arrived at camp. “For check in, we meet the kids and do a detailed intake of all their medications. From that, we make detailed spreadsheets and checklists for what they take and how they take it,” says Dr. Brahe. One of their other assigned duties was medicine dispensing. “After the check-in process, the medical staff essentially builds out organized binders with each camper’s medication checklist, as well as the actual medication containers for each cabin.”

This process gave them a unique glimpse into what happens after they write a prescription. “We usually just put in the orders. We are not involved with the actual mechanics of how these kids take their medications,” Dr. Brahe says.

One of Dr. Brahe’s campers, a 19-year-old girl with severe blistering disease and subsequent esophageal strictures that make swallowing difficult, taught her that it matters how medications are administered.

The first time Dr. Brahe brought the iron solution to the cabin with a small cup, her camper nicely asked her to go back to the medical building for a syringe. “Apparently iron solution tastes super gross, so she needed a syringe to shoot it into the back of her throat so that it didn’t trickle down, because it tastes so bad,” Dr. Brahe says. “I didn’t make that mistake again.”

We took on nursing-style duties, Dr. Parks adds. “It’s easy to say ‘put on these medications three times a day,’ but when you see it on the back end, you know there’s no way that people can do this given how much time it actually takes,” he says. “These kids’ parents spent hours cutting up bandages, laminating instructions, and as a new parent, it’s humbling to see how much they do.”

Camp Wonder gave the residents a perspective on how these children live their lives.

“We got to connect with the campers. It’s amazing how much you can bond and connect just sitting with someone and striking up conversation while feeding them through a G-tube,” Dr. Park says.

“These kids just want to be kids. They want to experience life just like anyone else, and Camp Wonder really works to facilitate that. Instead of telling them ‘no’ like the rest of the world probably does, Camp Wonder gives that agency back to the kids,” says Dr. Brahe.

One night’s evening activity was a prom, with a fully decorated gym, complete with music and plenty of dancing. A young camper with a severe blistering skin disease wanted to wear kitten heels with her prom dress. “I asked if her feet would be OK, and she said ‘no, but it would be worth it’,” Dr. Brahe adds. “We danced together that night and every time I asked how her feet were, she just repeated ‘Worth it!’ with a smile.”

The next day, when Dr. Brahe did her dressing change and found numerous new blisters, she smiled with all her teeth said worth it again, she recalls.

And it was. “I wish I could live my life so intentionally,” Dr. Park says.

Learn more about Camp Wonder in a recent article, available online: PracDerm.com/CampWonder22