SAN ANTONIO — Pulmonary fibrosis is a disease that comes with a prognosis of death in just a few years after severe scarring of the lungs.
"I couldn't believe what they were telling me that I only had two to five years to live," said Dot Delarosa, who was diagnosed with ideopathic pulmonary fibrosis in 2008. It is one type of the many kinds of pulmonary fibrosis. This type has no identifiable cause.
The symptoms of pulmonary fibrosis include a dry cough, shortness of breath, especially during or after physical activity, fatigue, weight loss, clubbing (a widening and rounding of the tips of the fingers) and swelling of the legs.
"It's a death sentence so you basically go home and start preparing for the end," Delarosa said.
The disease affects 5 million people worldwide. "In the U.S., more than 200,000 adults have the disease, and more than 50,000 new cases are diagnosed every year," she said.
Thankfully for Delarosa, she was able to get a lung transplant that extended her life. "It was incredible to take that first breath. Literally it was like, oh that's what it feels like to be able to breathe normally," she said.
Nine-and-a-half years later, Delorosa is still breathing a sigh of relief daily. She added, "Every day is a gift for me. I'm so grateful for this life-saving gift. I'm so grateful for the Pulmonary Fibrosis Foundation that gave me the hope and inspiration to start a support group."
All of those attending the summit say spreading awareness is of the utmost importance. Dr. Anoop Nambiar, an Associate Professor of Medicine and founding director of the Center for Interstitial Lung Disease at the University of Texas Health San Antonio said, "It is definitely a disease that we know is associated with a poor prognosis but it's not very well known."
Dr. Joseph Lasky, the Director of the Interstitial Lung Disease Program and Section Chief of Pulmonary/Critical Care at Tulane added,"We still have a long way to go, and this meeting is a way to accelerate improving care and getting to that goal of defeating pulmonary fibrosis."
Delarosa said for those who are diagnosed with the disease like herself, there is no greater advocate than yourself. She told us, "Get with your healthcare provider try to find out as much as you can about this disease. i'm grateful to be alive because I get to live with my mom and take care of my mom, and I promise you every day is a party. Every day we enjoy."
For more information about the disease or if you or a caregiver needs support click these links here - https://www.pulmonaryfibrosis.org - https://www.aboutpf.org/
A study called the "Precisions Study" was conducted which illustrates the promise of PF research in the future. For more information on the study, click here.