Cystic Fibrosis: Angela’s Story

Angela DeStasio’s dance movements are graceful and mesmerizing. She transitions effortlessly from an arabesque, to a jazz layout, to a stag leap as she combines elements of ballet, jazz and modern dance into a composition all her own.

Angela Distasio Watching the 22-year-old woman dance, most would never suspect Angela has a chronic disease, or the effort it takes to maintain her intense level of activity.

“Cystic fibrosis is an invisible illness,” Angela says. “People can’t see anything wrong with me so they don’t understand.”

Growing up with CF

Angela was only 3 months old when she was diagnosed with cystic fibrosis, an inherited disease that affects the glands that produce mucus, digestive fluids and sweat. When thick, sticky mucus accumulates in the lungs and sinuses, it can cause chronic respiratory issues such as coughing, wheezing and difficulty breathing, among other health complications.

With the help of her care team (doctors, nurses, nutritionists, physical therapists, and a social worker) at the Cystic Fibrosis Center at Children’s Hospital of Philadelphia (CHOP), Angela’s family learned how to manage her disease day to day. She returned to CHOP every two to three months for check-ups and worked hard to stay healthy and active.

Angela started tap and ballet dance classes when she was 5 years old. By the time she was 10, she was dancing every day and performing in regional dance competitions.

“When I began to cough more and get out of breath sooner, I knew it was time to get intensive treatment,” Angela says. In those instances, Angela spent some time in the Hospital where she received IV antibiotics to treat infections and the medical team adjusted her medications and increased her airway clearance therapy to combat the buildup of mucus in her lungs.

Despite more than a dozen hospitalizations during her childhood and adolescence, Angela was driven to continue dancing.

Taking cystic fibrosis to center stage

After high school, Angela was accepted as a dance major at Marymount Manhattan College. Once there, her classes, practice time and performances became even more demanding.

“I knew I was going to get sick if I didn’t take care of myself the right way,” says Angela.

Only a few of her close friends knew what Angela needed to do every morning to make sure her lungs were clear enough to get through the day.

“When I started telling people I had cystic fibrosis, no one wanted to believe me. And a lot of people had misconceptions about the disease,” Angela says.

When a class project gave her the platform to create a YouTube video about her life with cystic fibrosis, she jumped at the chance.

“It was a great opportunity to raise awareness of cystic fibrosis, and show how someone with a disease like this can still achieve their goals,” Angela says.

Daily life with CF

Angela starts her morning with an hour — or more — of self-treatment that begins with an inhaler to dilate her airways. Then, she uses a therapy vest to loosen and clear the mucus that settled in her lungs overnight.

Next, she performs a combination of nebulizer treatments with medications to reduce swelling and break down the sticky mucus in her lungs so it’s easier for her to cough up and clear her airways. Sometimes these treatments may include antibiotics to treat infections that cause inflammation. The goal is to make breathing easier and get more air to her lungs.  

Then it’s time to eat, shower and head off to class. Angela’s day is packed with dance and academic classes, as well as rehearsal time.

To learn more about Angela’s life with CF, watch Invisible Illness: Dancing Through Cystic Fibrosis.

Following her dreams

In January 2016, Angela performed in Train, a production by famed choreographer Robert Battle, at the Theresa Lang Theater in New York, NY.

Angela graduated from college in May 2016 with Bachelor of Fine Arts in dance, and a minor in psychology. She’s currently working as a dance teacher at a local studio near her hometown of Florence, NJ, as she saves money to return to New York City for audition season in January.

“I want to dance as long as possible and see where I can go with it,” Angela says. “But I’m also realistic; I plan to get a second degree in psychology. I’d love to be a school therapist at a performing arts high school, or a sports therapist.”

Today, Angela’s cystic fibrosis is under control and she’s loving life. After 22 years with the same care team at Children’s Hospital of Philadelphia, Angela is ready to transition to adult care at the University of Pennsylvania.

“I can’t believe how far I’ve come,” Angela says. “CHOP helped me live my dream.”

Originally published: September 2016

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