At the age of 9 her parents enrolled her in a summer camp with the Arthritis Foundation. There are around 50 camps across the country that help kids develop the independence and build self-confidence that they need. “I always felt like I was a little porcelain doll and everyone around me thought I was just going to break, this camp gave me the opportunity to interact with kids my age that were going through the same thing that I was going through,” she says. For the first time she was at a place where there were kids her same age and they understood each other and didn’t make her feel like an outsider. They did regular camp activities such as canoeing, arts and crafts, swimming, singing, and other activities.
“We would take our medication together and if somebody was in pain it wasn’t a big issue because in school it would’ve been a big issue, as well as embarrassing because no one else was going through it, so they didn’t understand it,” she explains. The camp also served as one of the first stages where she was able to sing for a big crowd for the first time. Ever since then, Villafañe has continued to perform at various events events with the Arthritis Foundation.
“This is where my love for performing started, from my disease, which is ironic that it was born from a very vulnerable place,” she says. “Everything that is good in my life has started from what should have been my biggest limitation, which is hilarious to me—I love it!” She continues to be a role model for kids that have the same disease, she meets kids at the Arthritis Foundation events and gets to speak to them and motivate them because even though she has the disease, she’s been able to accomplish so much.
“I think organizations like the Arthritis Foundation offer a lot of resources, not only to those that have the disease, but to their families because you affect a lot of people when you’re sick because you can’t take care of yourself and these organizations serve as a platform for advocacy,” explains Villafañe. For example, the day she found her adult rheumatologist she was very happy because she knew she could count on this person to help her lead a healthier life.
“I just found out that there are places where they don’t have pediatric rheumatologists and the Arthritis Foundation has a campaign right now to make it a known fact,” she says. Nevada just got their first pediatric rheumatologist, which is great news because before that they didn’t have anywhere to go, so these organizations are a great source of information and a place to build community support. There are so many programs and valuable information that the organization provides. To learn more visit the Arthritis Foundation and the Kids Get Arthritis Too for more information.
In Spanish
