‘Exhale, Mindfully Manage Your IPF’ is a new initiative co-sponsored by the American Association of Cardiovascular and Pulmonary Rehabilitation (AACVPR), the Pulmonary Fibrosis Foundation, and the international biotechnology firm Genentech. The program’s aim is to help people living with idiopathic pulmonary fibrosis (IPF), and encourage them to take a proactive role in managing their disease through at-home resources specifically tailored to their needs.
As a patient-centric resource, Exhale taps into an increasingly popular cultural trend called “mindfulness,” a discipline that combines Buddhist thought with Western scientific empiricism. According to the Center For Mindfulness Studies, many surveys and accounts have documented the social, health and workplace benefits of mindfulness with both clinical and non-clinical populations. Exhale is designed to inspire patients living with chronic diseases, like IPF, by delivering information on mindfulness therapy to those who may not have easy access to clinical counseling.
The Exhale program includes a four-part mindfulness video series with the titles “Introduction to Exhale,” “What is Mindfulness?,” “Setting Goals and Intentions,” and “Living in the Present.” The videos were created with consultation and guidance from internationally-recognized mindfulness expert and clinical psychologist Shauna Shapiro, PhD, and a professor at Santa Clara University in California.
The videos are tailored to help patients handle the emotional and psychological challenges that may come with a diagnosis of serious disease. A central objective of mindfulness practices is to help patients focus on what is most important in their lives, find motivation, and maintain a positive mindset while coping with the physical and lifestyle challenges of living with a chronic disease.
A discussion guide has been developed for “Exhale, Mindfully Manage Your IPF” in partnership with the Pulmonary Fibrosis Foundation to help individuals lay the foundation for a personalized, comprehensive plan to manage their IPF in consultation with their pulmonologist or other healthcare provider. Because the course of IPF is progressive and different for each person, the Exhale guide is intended to be a key partner in developing a plan tailored to the individual’s particular needs and circumstances, and also to help initiate important collaborative conversations about care strategies, typically over the span of many office visits.
IPF is a progressive, irreversible, unpredictable and ultimately fatal disease characterized by progressive scarring (fibrosis) in the lung. It is a specific type of interstitial lung disease in which the small air sacs of the lung, known as alveoli, gradually become replaced by fibrotic (scar) tissue, making it more difficult for the lungs to expand and preventing oxygen from readily getting into the bloodstream. IPF inevitably leads to worsening lung function and shortness of breath.
Once considered a relatively rare disease, IPF is now recognized as the most common interstitial lung disease (interstitial refers to the tissue surrounding the alveoli). An estimated 100,000 people are living with IPF in the United States, and approximately 15,000-20,000 new cases are diagnosed annually. It is estimated there are between 80,000 and 110,000 patients living with IPF in all of Europe, and between 5,000 to 8,000 patients living with IPF in Canada.
Bill Pommy, diagnosed with IPF in 2008, told Exhale that pulmonary rehabilitation has made a big difference in his health and life, and another step he has taken is practicing mindfulness, which his daughter, who is completing her PhD in neuropsychology, recommended to him. “Mindfulness relates to the mind-body connection and research has shown it may help people living with a serious disease to reduce stress, so I felt it was worth exploring,” Pommy said. “Living with IPF isn’t easy, but I believe you can do something about it.”