A guest post by Jacob McFeeters
Life is hard when we are not comfortable in our own skin. This is especially true for children, where interactions with peers are an important part of personal development and self-esteem. Research shows that both congenital anomalies and acquired skin disorders impact the self-esteem of pediatric patients.
Thankfully, dermatologists can treat many of these chronic skin conditions by prescribing medicines, conducting procedures, or administering injections to clear the afflicted skin. Unfortunately, some skin conditions are so severe that even treatments from trusted dermatologist are not enough to cure the ailments.
The Worst Disease You’ve Never Heard Of
Epidermolysis bullosa (EB), often referred to as the “the worst disease you’ve never heard of,” is a rare systemic condition where the skin has trouble adhering to itself, resulting in blisters, open wounds, and ultimately skin that can rip off at the slightest abrasion. While there are extensive research efforts undergoing, there is not yet a cure.
Children with EB and other skin conditions such as alopecia, ichthyosis, and psoriasis did not ask for these conditions but nonetheless must adapt to them to live their lives. They must take breaks from activities to apply topical medicines. Their version of playtime looks a little different with gloves and dressings hugging their skin for protection. They look different from their friends and are asked about their condition by their peers. It’s not hard to imagine they may be treated differently as well.
All Kids are Still Kids
Children are remarkable learners. These kids learn at a young age the everyday routines required to keep their skin as healthy as possible. Their routines include things like painful dressing changes, medicinal cream applications, and strict dietary restrictions. On the flip side, they also learn from their everyday interactions that they are different from their peers; that they have a condition and that people notice it.
Dermatologists are experts at treating and educating their patients about the skin, but how do they nurture the holistic aspects of their pediatric patient’s health? How do they bolster important things like self-image, confidence, and relationship-building skills?
Welcome to Camp
I’d like to introduce you to Camp Discovery.
I first volunteered for camp in 2019 in Andover, Connecticut as a cabin counselor and recently got to volunteer again at Camp Discovery as an Ohio State Medical student this past summer in Crosslake, Minnesota. I don’t have a skin condition myself, but my experience volunteering at camp is what motivated me to conduct dermatological research and pursue medical school.
Camp Discovery is aptly named because it is a weeklong summer camp that allows children with skin conditions to discover a world they didn’t know existed; one where they don’t have to deal with odd looks, questions, or comments because every camper in attendance has been referred to the camp by their dermatologist due to their skin condition.
The children are introduced to a world where their volunteer cabin counselors and dermatologist clap them off the bus and into the log cabins where they will spend the week in nature. The Crosslake Minnesota location of Camp Discovery is surrounded by two pristine lakes with an accessible beach, and the children get to partake in activities such as swimming, boating, tubing, archery, fishing, arts, crafts, talent shows, tailgate parties, and even a dance party!
It’s a place where kids who are used to hiding and trying to blend in feel free to just be. The first thing I’ve noticed the returning campers with alopecia do is take off their wigs and gently let new campers know it’s okay to do the same because they are at camp. Every child is allowed to be exactly who they are and is completely accepted by their peers, and I’ve seen them form strong bonds with others who share their condition.
A Place to Be Themselves
The American Academy of Dermatology (AAD) ensures that Camp Discovery is completely free of charge to the children who come from all over the country. Most campers return every year they can, with ages starting at eight years old and running up to 18. Once 18, many campers elect to become cabin counselors themselves and become instant role models showcasing their love for camp, and leading us in the traditions of talent show hosting and campfire songs.
I’ve met campers with such an undeniable zest for life that even when their conditions require daily hours-long, full-body dressing changes that often rip off skin, they’re still entertaining the medical staff with voice impressions and jokes. One of these natural comedians hosted the talent show as impressively and hilariously as any star in Hollywood!
I’ve witnessed campers arrive shy and reserved, and leave talking my ear off about how they can’t wait for camp next year. And I’ve seen children who were previously unable to do strenuous activities such as tubing and horseback riding due to their conditions, participating in both through creative workarounds safely developed by the in-house dermatologists.
We have a saying at Camp Discovery: If the child wants to do it, we can make anything possible. Campers have repeatedly explained to me that camp is their time, and I gladly agree. It’s my job to make their experience as fun-filled and safe as I can as their cabin counselor. I feel it’s the least I can do, given how much the campers inspire me.
Inspiring a Medical Career
It’s been very rewarding to witness some of the best aspects of humanity at Camp Discovery, and then to be able to return to medical school at Ohio State with a renewed vigor to work towards caring for such a special patient population in the future.