Ana Villafañe loved to sing and do skits with her friends at the Arthritis Foundation’s juvenile arthritis camp, Camp Funrise, in Miami. Now look where she is. The young girl who sang Gloria Estefan’s song “Reach” – and claimed it as her personal anthem – will play Gloria in “On Your Feet!”, a Broadway musical about the legendary singer’s life. And this summer, the 26-year-old plays the female lead in the movie “Max Steel,” and will also star in the Hulu original series “South Beach.”
Recently, Ana graciously took time after a long day of rehearsing to talk about her career, living with juvenile arthritis (JA) and her connection to the Arthritis Foundation. “Anything the Arthritis Foundation needs, I’m here,” she said. “This is family in a way that’s more important than anything.”
Q: You are in a major movie and headed to Broadway. Have you always wanted to be an actress?
A: I always saw myself as more of a singer. I learned to act from performing live. I was always dreaming, but little did I know I was training to be an actress all along. I’d never actually imagined myself doing it in real life! I was lucky to have support from people who believed in me. Then it was just a matter of learning to be disciplined – and never giving up.
Q: Tell us about your start as a singer.
A: Someone asked me to sing at the Arthritis Foundation’s  National Juvenile Arthritis Conference [when I was 11]. I had never performed in front of a real audience before. Without the JA camp that empowered me and where I started singing in little talent shows [when I was 9], I would never have thought of doing what I am now.
Q: The song you performed at the JA Conference was “Reach” by Gloria Estefan. Now here you are playing her on Broadway.
A: How crazy is that? The song is so incredibly powerful; I felt connected to every lyric and it became my personal anthem. It’s from the year I first got sick. Now we’re in rehearsals for the show, and I get to sing that song every day and play the role of this [inspiring] woman who had no idea how much she’d personally affected my life. And she handpicked me to do it? Surreal!
Q: Did you share your story with her when you met?
A: I was terrified to tell Gloria [about my JA], until I read the script. I realized that in order for me to play this role she had to know I was emotionally mature enough to handle her life’s experiences. Gloria didn’t judge me; she responded by trusting I understood her struggles at a deeper level.
Q: Can you tell us about when you were first diagnosed?
A: I was 7 years old. The doctors thought I had a seven-day virus, and when it didn’t go away I was admitted into Miami Children’s Hospital for a ‘fever of unknown origin.’ The timing of my systemic onset is all kind of a blur now, but I know I was upset about missing school. I remember being completely confused. I could sense my family was heartbroken, but to me, the news was supposed to be a relief. We finally knew why I was in pain and why I was sick – then we could fix it. I guess I was old enough to wonder why people weren’t happy to have the answer, but I was too young to understand the idea of a chronic illness.
Q: This summer, you’re switching gears from Broadway rehearsals to promoting "Max Steel" [which opens Aug. 28]. How do you safeguard your health during hectic times?
A: It’s a lot of uncharted territory; a lot of firsts are happening for me this year. The press schedule is intense, but I have a team that helps me regulate it so I don’t burn myself out. They’re sensitive about my JA. I’m open and honest so they can know what I’m dealing with, in case I have bad days – and they do happen.
I had to teach myself how to rest. For me, rest doesn’t feel productive. I’ve learned how important sleep is; rest is now part of my schedule. We’ll be promoting "Max" internationally; the mind-over-matter mantra is the foundation of my life! It’s all positive energy, so I live my life clearly and directly and stay focused on what I’m doing. Then I accept when I need to listen to my body. My dad always says, “The body pays the check.” So I listen to it. I’ve signed on for three films in the "Max Steel" franchise.
Q: Do you discuss your JA with cast mates and colleagues?
A: When people find out [I have JA], they’re like, what? That’s the double-edged sword of having a condition you can’t see. My arthritis is my private battle, but I do let people know. Professionally, I have no choice but to be honest because I have a very active condition. It’s awkward. I still get anxious about people thinking less of me – especially in such a competitive industry. I know what I’m capable of.
Socially, it just naturally tends to come up after a while. I never bring it up in regular conversation or give it too much energy unless I have to. At the end of the day, it is part of me as much as my brown eyes and brown hair are.
Q: How has JA changed your life – or changed you?
A: My life is not defined by my condition. I am not defined by my condition. Living with JA makes up a big part of who I am and accepting that took a long time. I learned the value of challenging myself every day to be the best I can possibly be, while learning to acknowledge certain limits. I learned the value of independence and what that means to me at a very young age. JA teaches me to never underestimate myself or anyone else.
Q: What would you tell a child just diagnosed with JA?
A: JA doesn’t define you. You get to define you. The best advice I could give is to remember you’re not alone. You don’t have to be like everybody else in order to be capable.
Sometimes it is going to hurt. But know that what you’re feeling is giving you a strength that is actually your own personal superpower.
How Ana Takes Care of Herself
Ana takes medication to control her disease. To feel her best every day, she sticks to her self-care plan. Here’s what keeps her so healthy and energetic.
• Hitting the gym every morning to exercise and warm up for the day.
• Lots of stretching. “The soreness in certain joints is constant.”
• Muscle-strengthening for her weak hands and to take pressure off her knees and right hip, which are “the biggest issues.”
• Massage therapy for her neck and right shoulder.
• Drinking plenty of water and cutting out gluten.