Francesca Tenconi, president and CEO of Children’s Skin Disease Foundation and Camp Wonder, presented at Fall Clinical 2023 about the challenges of chronic skin conditions in children.
At just 11 years old, Francesca Tenconi was diagnosed with pemphigus foliaceous, a rare skin disease causing painful, itchy sores on the skin. For Tenconi, it took almost 6 months to receive a diagnosis, and even more time to get her disease under control with the help of dermatologists.
“The physical part of the disease is very difficult, but the emotional side of having a rare disease is incredibly difficult. It’s very isolating,” said Tenconi.
For her 16th birthday, Tenconi wished for donations to start a non-profit for other children with skin diseases. One week later, the Children’s Skin Disease Foundation was founded. Tenconi wanted to take the organization one step further to become a community for children that was also fun and inviting, and as a result, Camp Wonder was founded alongside dermatologists Jenny Kim, MD, PhD, and Stefani Takahashi, MD.
Camp Wonder is a summer camp that is free to all children and all families; no family pays to attend. According to Tenconi, there are approximately 13 rare skin diseases represented at Camp Wonder.
“The biggest thing that I’ve learned in the last 23 years is the importance of community, and for those suffering from their diseases, it’s a very, very isolating experience. But there’s something incredibly powerful about community. [Camp Wonder] doesn’t do support groups, we don’t do therapy, it’s just a week of fun,” said Tenconi.
One impactful moment from a Camp Wonder week that Tenconi described was one of the very first weeks when a therapist was on-site. The therapist asked the camp children to trace their bodies on large pieces of butcher paper and then the children could decorate themselves however they wanted. Some children drew themselves as space cowboys, believing that must be “the coolest profession.” But what stuck out to the therapist was that many of the children did not put a face on their own tracing.
Tenconi said that according to the therapist, these children with chronic and severe skin conditions do not want to be seen. They are embarrassed and self-conscious. “But they do want to be seen. They want to be celebrated just like the rest of us and they want to be supported just like us. That’s really what Camp Wonder is about and that’s what we’ve built over the years,” said Tenconi.
For clinicians looking to help support Camp Wonder or to recommend their patients to attend, they can visit their home page for more information.
Tenconi F. Patients perspective: dealing with a rare disease. Presented at: 2023 Fall Clinical Dermatology Conference; October 19-22, 2023; Las Vegas, NV.