Award-winning musician raises awareness of rare and fatal lung disease
(BPT) – Watching a parent suffer from a serious, rare disease is devastating, as award-winning country music artist Joe Nichols knows firsthand. Nichols lost his father to a fatal lung disease called idiopathic pulmonary fibrosis – or IPF – after numerous misdiagnoses and years of suffering from persistent and disruptive symptoms.
In honor of his father, Nichols is teaming up with Boehringer Ingelheim Pharmaceuticals, Inc. and people suffering with IPF to raise awareness of the disease and encourage those who may be experiencing its symptoms to take action.
The national education campaign – Breathless: A Behind-the-Scenes Look at IPF – brings Nichols together with real people sharing real stories about how IPF has touched and impacted their lives. If individuals think they may have IPF symptoms, the campaign urges them to take action to get diagnosed early and learn about treatment options. A few simple clicks may be all it takes to help someone with IPF.
Visit the website – www.BreathlessIPF.com – to learn more about IPF and the stories of people living with the condition. Help make a difference by sharing the educational content on the website through social media.
“Sadly, it took three years before my father was diagnosed with idiopathic pulmonary fibrosis, and he eventually lost his fight at a young age of 46,” remembers Nichols. “It’s important for me to share my story to help others, because I don’t want people to go through the physical and emotional difficulties my family did during those years before he was eventually diagnosed.”
IPF is a progressive and fatal disease that causes permanent scarring of the lungs, difficulty breathing and prevents oxygen from getting to the body. Although considered “rare,” IPF is four times more common than Lou Gehrig’s disease. It affects up to 132,000 Americans, and approximately 40,000 people die from the disease each year, as many as breast cancer. Most patients die from the disease within three to five years after diagnosis. Early diagnosis and treatment are critical to helping treat IPF.
“Living with idiopathic pulmonary fibrosis is hard but living with this disease without being diagnosed can be worse,” said Marilyn Glassberg, M.D., Professor of Medicine and Director, Rare and Interstitial Lung Disease Program, University of Miami Miller School of Medicine. “If you think you or someone you love might be experiencing the symptoms of idiopathic pulmonary fibrosis, then go see a doctor right away so that the proper tests and screenings can be performed. Your doctor can refer you to a lung specialist called a pulmonologist to make an accurate diagnosis and develop a treatment plan.”
Diagnosing IPF can often be difficult and take years because the symptoms – breathlessness during activity, a dry and persistent cough, chest discomfort, fatigue and weakness – are similar to, and often confused with, other “better known” and more common diseases such as chronic obstructive pulmonary disease (COPD), asthma, or congestive heart failure. Up to half of IPF cases are initially misdiagnosed and most people suffer with symptoms for almost two years before receiving an accurate diagnosis.
“We’re looking for help from everyone. You can help by spreading the word and sharing the videos and educational materials on the website – www.BreathlessIPF.com – through social media. Someone you know or someone in their social network may be facing undiagnosed IPF right now,” said Nichols. “Together we can make a real difference in people’s lives.”
Who’s at Risk: Signs and Symptoms of IPF
* Persistent shortness of breath (especially from mild physical activity)
* Persistent dry, nonproductive cough
* Fatigue and weakness
* Crackling sound when breathing in (sounds like Velcro)
* Finger clubbing (widening and rounding of the fingertips)