Educating the public about cystic fibrosis

Jon Roberts, MD, Driscoll Children’s Hospital Cystic Fibrosis Center Director
A Driscoll Children’s Hospital Pulmonologist hopes a new movie educates the general public about the unique challenges patients with cystic fibrosis (CF) face each day.

Now in wide release, the movie “Five Feet Apart” tells the story of two teenagers with CF who fall in love, despite their having to stay far away from each other to avoid cross-infection.

Cystic fibrosis is a genetic disease that causes a buildup of thick, sticky mucus in a patient’s lungs. It causes ongoing lung infections and progressive lung damage. CF also affects other parts of the body, including the pancreas, and can make it difficult to absorb nutrients from food and maintain a healthy weight. More than 30,000 people in the United States have cystic fibrosis.

Guidelines suggest that people with CF maintain a distance of 6 feet between each other because germs can spread as far as 6 feet when someone coughs or sneezes. The 2 teens in “Five Feet Apart” know that, but they are trying to experiment with what their limits might be.

Jon Roberts, MD, Driscoll Children’s Hospital Cystic Fibrosis Center Director, said he hopes the movie will bring awareness to CF and the dangers of living with the disease.

“Unlike other diseases where you want patients connecting for support, with CF you don’t want them sharing bacteria that could be multi-resistant. We stagger appointments to avoid having multiple patients in the waiting room at the same time, and we provide masks to patients and staff,” said Dr. Roberts. “We also have our CF patients don purple T-shirts (CF is represented by the color purple) during outdoor fundraisers where we know there will be multiple patients in attendance.”

The Cystic Fibrosis Center at Driscoll Children’s Hospital houses an experienced team of physicians, respiratory and physical therapists, nurses, pharmacists, nutritionists, and social workers who are trained to meet the special needs of CF patients. Driscoll’s pediatric pulmonologists also travel to the Rio Grande Valley and Laredo to provide care for CF patients living in those areas in order to help ease the burden of having to make multiple long trips to Corpus Christi each year.

Since 2009, the Texas state newborn screening program has been testing for CF, allowing for diagnosis and intervention at an earlier age.  Life expectancy for people with CF has increased dramatically to 44 years of age and with new research, doctors are hopeful that number will only go up.

“Treating these patients early on improves their quality of life and lifespan. With newer medicines, technology and gene therapy, kids are living longer, and we’re excited to be a part of that,” said Dr. Roberts.

For more information on Driscoll’s Cystic Fibrosis Center, visit www.driscollchildrens.org/specialty/cystic-fibrosis-center