Because the sounds of people with the disease are different from those who don’t have it, doctors can use the system to detect IPF with a stethoscope.
The longer it takes to start treating IPF, the worse the outcome is likely to be — so early diagnosis is vital.
One way to identify IPF is from Velcro-like crackles in the lungs. Doctors who recognize the sounds can diagnose and treat the disease earlier.
Boehringer Ingelheim came up with the lung-sound-recognition system and other initiatives to mark IPF World Week, Sept. 16-24. The educational tools it created, which physicians can visit online, include sounds of healthy lungs and of lungs with IPF. It has also created online educational tools for patients.
The company came up with the initiatives after analyzing the results of two global surveys it sponsored, which covered 400 pulmonologists and 150 patients. A key finding was that physicians and patients agree that maintaining lung function as long as possible is one of the major goals of IPF treatment.
Despite this alignment in priorities, and the availability of medicines for the disease, around 30 percent of patients said they do not feel they have a big enough say in treatment decisions.
“What I hear loud and clear from patients is that a key concern for them is getting a confirmed diagnosis,” Liam Galvin, secretary of the European Idiopathic Pulmonary Fibrosis and Related Disorders Federation, said in a press release. “Next is talking with their physician about treatment that can slow the progression of IPF. The realization that you have IPF is shattering, and patients have to think about their future: They worry about lung function decline and they fear acute exacerbations.”
The online platform that Boehringer created for patients is called Life with PF. It includes a broad range of background materials, videos of IPF patients’ stories, and webinars with pulmonologists.
“Time is of essence,” said Ivan Blanarik, Senior Vice President and Head of Therapeutic Area Respiratory at Boehringer Ingelheim. “If patients can be diagnosed” quickly enough, “and referred to an expert pulmonologist to initiate treatment at the earliest opportunity, we stand a greater chance of making a real difference in the ongoing challenge of managing this devastating disease. We need to raise awareness for IPF and act together to help patients and their families.”
The theme of this year’s IPF World Week is Blowing Soap Bubbles. When you are healthy, it should take you less than a second to blow bubbles. But if you suffer from IPF, this simple activity can be very challenging.
With the slogan Breath of Hope, this year’s campaign aims to raise awareness of IPF while reminding us all about the importance of lung health.
One can participate in IPF World Week by blowing soap bubbles alone, in a group, with family, doctors or even pets, then sharing the video on Facebook, Twitter or other social media using the hashtag #IPFWorld.
The IPF World Week’s missions include creating a global network of people working to support IPF patients, developing a map of Centers of Excellence that are diagnosing and treating IPF, raising awareness of the disease, offering support and resources to patients and their families, promoting a donating culture, promoting social awareness and sensitivity toward the dangers of smoking, and letting the world know about the new frontiers of science that researchers are harnessing to try to find a cure for IPF.