Imagine being diagnosed with a deadly disease you have never heard of. A disease that your family and friends have never heard of. A disease with no colored ribbons, no 5k runs to help people who face the disease band together.
One such disease is idiopathic pulmonary fibrosis – or IPF – a rare and fatal lung disease that permanently scars the lungs and causes difficulty breathing. In addition to symptom management options, there are now FDA approved medications to help patients suffering from IPF. Even so, patients and caregivers living with IPF experience an unexpected emotional toll prior to and after diagnosis.
In an effort to shed new light on the emotional and physical impact of rare lung disease, a recent survey illuminated the patient and caregiver experience. The survey, conducted in 100 self-reported IPF patients and 100 caregivers, offered key insights into this orphan disease, including:
- On average, patients experience IPF symptoms for nearly two years before being diagnosed.
- More than three-quarters of patients and caregivers affected by coughing caused by IPF say that people often keep a distance because of it; and more than half of patients and caregivers using supplemental oxygen feel that it is embarrassing to be seen with the equipment.
emotional and physical impact of rare lung disease
Dr. Jeffrey Swigris, Pulmonologist, and John Morthanos, IPF patient spoke with me recently to share more about the disease.
.
.
Remember that February 28 is Rare Disease Day. I’d like to encourage you to learn more about rare diseases such as IPF, and what you can do to help your loved ones and their caregivers have the support they need. Be sure to visit www.lungsandyou.com to get more information about idiopathic pulmonary fibrosis.
emotional and physical impact of rare lung disease
.
About Jeffrey James Swigris (pulmonologist)
National Jewish Health
Jeffrey Swigris, DO, MS, is an Associate Professor of Medicine at National Jewish Health and the University of Colorado. His clinical interest is in evaluating and caring for patients with interstitial lung disease (ILD) of any cause. Dr. Swigris’s individual research program focuses on how patients perceive living with ILD, how to assess those perceptions and how caretakers might improve quality of life in patients suffering from ILD. He was recently awarded funding for a nationwide research project: The Participation Program for Pulmonary Fibrosis or P3F (www.PFresearch.org). He is a member of the American Thoracic Society, American College of Chest Physicians and is on the Pulmonary Fibrosis Foundation’s Medical Advisory Board.
.
John Morthanos (IPF patient)
New Haven, CT
In 2000, John thought he had a heart attack because he was having trouble breathing; doctors found that his heart was fine, but there was a mysterious spot on his lung. After numerous doctor’s visits and tests, his breathing problems were attributed to acid reflux, stress and even allergic reactions to his cats. A lung biopsy also found mild scarring. However, John’s breathing problems became progressively worse, to the point that he couldn’t walk up the stairs without being winded and taking the trash out felt like pushing a car up a hill. It was then that John knew something was really wrong.
In 2011, after being referred to experts at Yale University, John received devastating news: he had idiopathic pulmonary fibrosis, a life-threatening disease that causes permanent and progressive scarring of the lungs. Immediately, John, his wife Paula and his medical team developed a treatment plan, including supplemental oxygen and pulmonary rehabilitation. Because his condition was getting worse, John later received a single-lung transplant. Today, John is focused on raising awareness about IPF so others can hopefully avoid the struggles he faced securing a timely diagnosis.
emotional and physical impact of rare lung disease
