Giving A Voice To The Cystic Fibrosis Adult Community
(NAPSI)—If Ali Christensen Wilde had been born in the 1950s, it would have been unimaginable that she could dream of going to college and marry her high school sweetheart. But the 23-year old with cystic fibrosis has just done that—and so much more. The newlywed is now living in Provo, UT with her husband Chase, and is pursuing her undergraduate degree while singing and speaking out about living with cystic fibrosis as an adult.
CF is a life-shortening genetic disease that affects about 30,000 children and adults in the United States. In the 1950s, most children with CF did not live long enough to attend elementary school. By 2011, the median life expectancy for people with CF was in the upper mid 30s. The disease primarily impacts the lungs and digestive system, making it hard to breathe and to digest food. More specifically, CF impacts the way salt and water move in and out of the body’s cells, causing the body to produce unusually thick, sticky mucus that clogs the lungs and leads to life-threatening lung infections.
One of the things Ali loves is to sing with her younger sister, 16-year old Christina, who also has CF. While their first performance was a sad occasion—the funeral of their older sister April who had also battled CF for years—it unleashed a passion that would lead them to sing as finalists on NBC’s America’s Got Talent in 2010.
Last year, the sisters released a song, “Something About Me,” to share their message that challenges, like CF, do not define them or hold them back from pursuing their goals. The song and behind-the-scenes video are available for free on www.cfvoice.com, a website and online community for people of all ages living with CF, supported by Novartis Pharmaceuticals Corporation.
CF therapy may require up to 20 medications to be used every day with an average daily treatment burden of approximately 2 hours. Today, there are more treatment options than ever to manage the incurable disease. In the last year alone, several medications to manage cystic fibrosis have been approved by the Food and Drug Administration.
Ali is grateful for the support she’s had and the encouragement she’s received. “Our mom and dad are great supporters,” she notes. “They want us to be healthy, they want us to succeed, but my favorite part is they didn’t raise us like they had sick children. They believed in us and wanted us to do anything that we wanted to do.”
For Chase, the transition from boyfriend to husband has also included learning more about CF and the treatments needed to keep Ali healthy. As the life expectancy continues to increase, more young adults with CF are navigating independent living, relationships and career. Ali continues to inspire as she enters this new phase of her life. “There is someone out there for everyone. As long as we’re doing our best to take care of ourselves, we will find someone who wants to learn with us and who wants to love us for who we are.”
On the Net:North American Precis Syndicate, Inc.(NAPSI)