IPF, a form of pulmonary fibrosis (PF) with no known cause, is a progressive and fatal disease that causes permanent scarring of the lungs, difficulty breathing and prevents oxygen from getting to the body. IPF affects as many as 132,000 Americans each year.
Rose decided to share her family's experience so others can become more knowledgeable about the facts behind this disease, and why it is imperative to know the signs and symptoms.
'Like me, before my dad was diagnosed, you've probably never heard of IPF,' said Rose. 'What made his diagnosis so hard was that it didn't make sense. He went from being a youthful, active, healthy man who loved long hikes to no longer being able to take three steps without stopping to catch his breath. I felt so helpless watching as his health declined so rapidly in just one year. IPF took away many of the things that he loved.'
There are currently no FDA-approved drug treatments for IPF, and most patients die from the disease within three to five years. Symptoms include shortness of breath, chronic dry cough, fatigue and weakness, chest discomfort, loss of appetite and rapid weight loss.
Diagnosing IPF can often be difficult, as it requires specific testing, and misdiagnosis is common because IPF symptoms are similar to other respiratory diseases like COPD and asthma, and to congestive heart failure.
In fact, a small survey of 68 randomly selected self-identified IPF patients and caregivers, fielded through the Coalition for Pulmonary Fibrosis (CPF) membership with support from Boehringer Ingelheim, found that they or their loved one saw 2.7 doctors, on average, before they were properly diagnosed. The survey also found that patients were most often misdiagnosed with pneumonia (15 respondents), bronchitis (14 respondents) and COPD (12 respondents) prior to an accurate IPF diagnosis.
A majority of patients and caregivers also reported that they did not initially understand the implications of an IPF diagnosis (48 respondents) and that they wish there was more information available about IPF (64 respondents). As IPF is a progressive disease, it may also have a significant impact on a patient's emotional state. The survey found that patients felt isolated (12 respondents), helpless (20 respondents) and anxious (26 respondents), and 57 respondents strongly agreed or somewhat agreed that they or their loved one is no longer able to do the things they once enjoyed.
'Increasing awareness of IPF is the first step in helping patients and physicians recognize the symptoms and receive an early and accurate diagnosis,' said Talmadge King, Jr., MD, Chair of the Department of Medicine, University of California San Francisco. 'With IPF, early diagnosis and intervention are extremely important as management options such as supplemental oxygen or pulmonary rehabilitation can be initiated sooner.'
Rose's desire to pay tribute to her father and raise awareness for the condition led to a new partnership between Boehringer Ingelheim and continuing to work with the Coalition for Pulmonary Fibrosis, for whom Rose serves as Chair of the Daughters of PF program, to shine a spotlight on the disease during Pulmonary Fibrosis Awareness Month in September. Through this partnership, Rose is turning her father's experience with the disease into an educational message: don't wait to get educated about IPF - know the signs and symptoms and speak to your doctor if you're concerned.
'We believe Rose's message will motivate physicians and people experiencing symptoms of IPF to learn more about this devastating disease,' said Mishka Michon, CEO, Coalition for Pulmonary Fibrosis. 'While IPF is rare, the number of individuals diagnosed with the disease continues to increase and it's extremely important for those experiencing symptoms to secure an accurate diagnosis.'
For more information, visit the Coalition of Pulmonary Fibrosis website at www.CoalitionForPF.org or the Pulmonary Fibrosis Foundation website at www.PulmonaryFibrosis.org.