Ana Villafañe Juvenile Arthritis

Ana Villafañe- “JA Doesn’t Define Me”

Ana Villafañe has come a long way since she first belted out the Gloria Estefan song, “Reach” at the Arthritis Foundation’s juvenile arthritis camp, Camp Funrise, in Miami, Fla., at the age of 9. The rising star, now 26, is portraying Estefan in a new Broadway musical, “On Your Feet!” about the legendary singer’s life. If that weren’t enough, she’s also appearing in the summer movie, “Max Steel,” as well as the new Hulu series, “South Beach.”

Her mother, Carmen Villafañe, never anticipated such success when Ana battled her first systemic onset of life-threatening symptoms at age seven. “She had a fever of unknown origin, as high as 106, 107 degrees, consistently, for a month-and-a-half,” she says. “She also contracted secondary issues; her organs were shutting down. Finally, her rheumatologist Dr. Rafael Rivas-Chacon told me, ‘If you ever see a swollen joint, call me immediately.’ The day we were leaving the hospital, Ana said, ‘Mom, look at my knee,” and sure enough, it had blown up. Dr. Rivas-Chacon was back in ten minutes. That’s how she was finally diagnosed.”

Carmen recalls how Ana missed the end of a school semester during this first, serious flare; she was then home-schooled until she recovered. “Her school coordinated it,” the grateful mom says. “We had so much support from her teachers, who were very understanding and staggered her homework. They also helped by not focusing on her limitations. They didn’t put her in the limelight, so to speak.”

Because Ana attended a parochial school, “the whole faith community supported us,” her mother adds. “They helped us with our other kids, drove them to sports and school events, and sent us meals when we needed them.”

Coping With Her Diagnosis

Still, Carmen and her family worried about Ana’s emotional health. “We had a diagnosis but felt overwhelmed.”

Ana did, too. She recalls her biggest challenge of this time, besides her actual symptoms, was “going back to school. I couldn’t relate to anyone,” she says. “Everyone treated me as if I were about to break … I had to adapt to my new life socially as well as physically. My after-school activities shifted from dance and sports to physical therapy. I was taking all this medicine. Everyone either treated me as if I were about to break … I would act out. At home, I was surrounded by love and the best intentions, [but] I felt no one could really understand.”

Finding Her Voice

That’s when Ana’s family discovered Camp Funrise.

“The Arthritis Foundation has been so supportive,” Carmen says. “I was apprehensive of her going to camp; I’m Cuban, and leaving my child for a week by herself was unheard of! But we knew we didn’t know enough, and that we had to let go. It was a blessing.”

Ana couldn’t agree more. “The fact there were other, real kids fighting my same fight blew my mind. Camp was finally a safe place where I wasn’t the outsider. I became empowered. I no longer felt bad for myself—and that is what changed my life. We were just a bunch of kids being kids and having fun. Doing arts and crafts, playing games, making s’mores, watching movies, playing pranks on each other … being free to be normal kids, with no judgments, in a place where we all understood each other. Some of my best friends to this day are people I met at camp.”

And, of course, it inspired her career. “Someone asked me to sing at the Arthritis Foundation’s [2000] National Juvenile Arthritis Conference [when I was 11]. I had never performed in front of a real audience before. Without the JA camps, where I started singing in little talent shows [when I was 9], I would never have thought of doing what I am now.”

The stardom thing is exciting, certainly. But Carmen is not surprised Ana has accomplished all she set out to do. “We say, ‘the harder your work, the luckier you get.’ Ana is a result of that!”

“I’m not defined by my condition,” Ana maintains. To kids with JA she adds: “JA doesn’t define you. You get to define you. Remember you’re not alone. You don’t have to be like everyone else in order to be capable.”

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