Camp Wonder opens derms’ eyes

Livermore, Calif. - Stefani Takahashi, M.D., treats pediatric patients daily in her Pasadena, Calif., dermatology practice, but the 15-minute-or-so visits reveal little about what children with severe skin diseases endure once they leave the office.

Dr. Takahashi says she now has a better understanding because she spends a week each year volunteering at Camp Wonder, a summer camp that she helped to launch. It’s a place where children ages 7 through 16 who suffer from serious skin diseases can safely be kids, under the watchful eyes of dermatologists and other healthcare providers who volunteer their time.

"We expected to provide an opportunity for children. ? What we have all learned is how much more we get in return, in terms of being inspired by their strength and, from a medical standpoint, getting a better feel for what it is like to live with chronic skin disease," Dr. Takahashi says.

"Being with them for 24 hours a day, seven days a week, definitely gives us a great perspective on what patients and their families go through on a daily basis. It helps to put our feet back on the ground and learn."

The camp

Dr. Takahashi co-founded Camp Wonder in 2001, along with Jenny Kim, M.D., Ph.D., assistant professor, division of dermatology, David Geffen School of Medicine at University of California, Los Angeles (UCLA), and Francesca Tenconi, a California teenager diagnosed with pemphigus foliaceous. Ms. Tenconi was 16 at the time.

Ms. Tenconi, now 23, also founded Children’s Skin Disease Foundation, which she and her family operate today.

"At the time of my diagnosis I had lost over 80 percent of my skin, and visited various hospitals to receive treatment," she says. "In visiting all these hospitals and meeting other children with skin disease, I realized that there was no foundation directly geared to help children and their families suffering from the physical and emotional impacts of skin diseases.

"I wanted to create a support system for children going through what I did," Ms. Tenconi says.

About 80 children attend the weeklong camp free of charge (including transportation to the northern California location).

"We would take more children; it is just that we do not have the space," Dr. Kim says.

Teens and young adults older than 16 attend, but as junior counselors or counselors, with the idea that they are great role models for their younger peers.

Kids and staff will experience Camp Wonder for the eighth year in June 2008 at Camp Arroyo, in Livermore, Calif., a campsite provided free of charge by the Taylor Family Foundation.

Drs. Kim and Takahashi are the camp"s medical directors, and enjoy support from nearly 30 other medical volunteers, including UCLA dermatology residents and attending physicians (UCLA closes some of its clinics for the camp), as well some University of California, San Francisco, and Stanford University residents and dermatologists.

Never a dull moment

Dr. Kim says dermatologists work before sunup and past sundown to care for campers with a wide variety of health issues, from eczema to epidermolysis bullosa.

"Some of the camps will limit children, but we have tried to accommodate all kids. Some years we will have over 20 children with epidermolysis bullosa. We also try not to limit their fun - so they can go swimming anytime, which means we have to change the dressings to accommodate their fun," Dr. Kim says.

Camp time is a great learning experience for the doctors, says Dr. Takahashi, who has seen skin conditions at the camp that she has not encountered in practice, including some ichthyoses. While she had seen dressings placed on the skin of children with epidermolysis bullosa, she had never actually changed the dressings until attending Camp Wonder.

More than enjoyment

Camp Wonder offers campers benefits beyond a week of fun, Ms. Tenconi says.

"First, camp gives the kids self-confidence, because they are in an environment of acceptance and encouragement. Second, they meet other children who have been through similar experiences (such as being made fun of or teased) and can now rely on each other for support during hard times," she says.

"Third, most of our campers are not be able to attend a regular summer camp, so when they go back to school in the fall not being able to talk about going to camp during the summer, it is another reason why they are different," she says.

"By coming to camp, they get a sense of normalcy by participating in typical camp activities, such as arts and crafts, horseback riding, swimming, bunk skits, carnival night.

" ... It is because of our phenomenal medical staff that the children can come to camp and maintain their medical regimen. Our teenage counselors and adult volunteers treat them like normal kids and look past their illness," Ms. Tenconi says.

Children leave camp having developed a strong support network, according to Dr. Takahashi.

"Even though camp is just for one week of the year, it can improve their entire lives," she says.

A no-brainer

Dr. Takahashi says she does not think twice about taking a week each year to help these children.

"I think one week out of the year is not much to ask of us. We take our families with us, which has been nice," she says. "If we could, we would probably like to do it even more than one week out of the year."

Dr. Kim says the children, counselors, doctors and other healthcare providers have become extended family.

"Because we are a small organization, it really does have a feeling of closeness. We have medical staff (including nurses), and some of the counselors who have been coming for five, six, seven years," Dr. Kim says.

Francesca’s mother, Christine Tenconi, says her daughter has gained self-confidence as a voice for children with skin disease.

"She has seen the challenges they face on a daily basis: the stares, the hurtful remarks, and the pain and suffering from the disease itself. Through these experiences, she has worked with extraordinary passion to create an environment at camp where they can come, have fun and all they need to worry about is just being a kid for a week," she says.

The campers echo Tenconi?s thoughts with appreciation.

Nicky, a 9-year-old Camp Wonder camper who has epidermolysis bullosa, says, "There are campfires, s’mores, arts and crafts, boats, everything you can think of. It's like a wonderland of happiness."

The stories of happiness are endless, the doctors say.

"One child’s parents told us that from the minute they leave camp, her child counts the days when he can come back," Dr. Kim says. DT

How you can help

CSDF depends on the generosity of supporters to raise funds for the camp, so one way that interested dermatologists and others can contribute is through financial support.

Anyone interested in volunteering should contact Francesca Tenconi through www.csdf.org.

Interested providers also can donate medical supplies, such as dressings, for the annual camp.

For more information, visit

www.csdf.org

or call 925-947-3825.