UCF grad helps celebrity sister with juvenile arthritis
As an actress, singer, dancer and soon-to-be Broadway star, Ana Villafañe may seem to be living a perfect life for a 26-year-old. But what people don't see from the outside is the condition she has been living with for the past 19 years: juvenile arthritis.
Juvenile arthritis, or JA, is an autoimmune disorder that involves swelling in one or more joints lasting at least six weeks, and is considered the most common form of arthritis, according to the Arthritis Foundation website.
Ana's older sister Carmen, a UCF graduate of 2009, has been by her sister's side through the whole experience, and they have both been advocates for change in the understanding of JA.
The Arthritis Foundation hosts the National Juvenile Arthritis Conference for children and families every year during the month of July to raise awareness for JA. The four-day conference started on Thursday, where children from all around the country have been participating in the 31st annual event of educational sessions.
Only a few years after she was diagnosed, Ana started becoming involved with the groups that were held at each conference, where she would bond with other children who were in her same shoes — which is about 300,000 in the United States, according to a press release.
Now, 15 years later, she has emphasized the effect the conference has had on her, and she inspires to make a lasting impact of her own.
"I like to actually get involved because I feel like I've received so much help in my life," she said. "As you grow up, you kind of lose the sense of embarrassment about it, you start to just own it and you stop apologizing. … It just becomes part of the package."
A record attendance of 1,700 participants registered to visit Caribe Royale Resort in Orlando for the conference to learn more about their disease and build friendships with others living with JA, the release states.
"For kids who might have siblings who are sick or have some chronic disease, it's really just a matter of being there the way they need you to be there," Carmen said. "You see her and you would never know [she has JA]. And I think that's largely because of the way that we were brought up.
"To everyone else, she was different. But to us, this was her reality."
Although Ana always had the support of her family and close friends, she said growing up in a different kind of way was not always very easy. In and out of a wheel chair was difficult for her when she was little, especially when she went to high school.
"There was a lot of feeling like I was sometimes being treated like I was a porcelain doll, like I was about to break. And then there's that intuitive, stubborn piece of myself that wanted to do anything to be against that," she said. "I would try to do anything to get the attention off of that because the last thing I wanted was for someone to look at me and be like, 'Oh, that's the girl who's sick.'"
Ana took the obstacles of growing up and used them to build a heightened sense of awareness and maturity that others her age had not yet developed.
She said living with JA has also trained her to be proud of certain things from a different perspective. Running for cross country, practicing on the cheer team and going to the gym every morning has helped her experience a special sense of accomplishment.
"When I crossed the finish lines in cross country, I was never winning races, but the fact that I was finishing them was a really big deal to me," she said. "I didn't have to talk about it. It was just a personal victory."
Carmen shared a room with Ana growing up, taking care of her when she needed assistance unstiffening or getting out of bed.
"We're sisters at the end of the day," Carmen said, now working in New York as Ana's publicist as she steps into the life of a celebrity.
Ana graduated from Loyola Marymount University in Los Angeles, California, and will be moving to New York at the end of August, taking her passion with her.
She will be performing the lead role of Gloria Estefan in the new Broadway production On Your Feet! — a musical based on the life and music of Emilio and Gloria Estefan — which will premiere on Broadway Nov. 5. She has put her acting talents into the films South Beach, which will be available on Hulu on Wednesday, and Max Steel, which is slated to be released Jan. 2016.
"In many ways, she's my hero," Carmen said. "They always say celebrities and actors were born for it, and there's literally no other job she can do because this is her life. She eats, sleeps and breathes it."
Rachel Stuart is the News Editor for the Central Florida Future. Follow her on Twitter at @RachSage or email her at RachelS@CentralFloridaFuture.com.