Two years ago today, an inspirational young woman with whom I had the privilege of working for several years passed away. She died of an incurable cancer that no one should ever have to face. While fighting this ginormous battle, she exhibited the most compassion, selflessness, and…
Living Out Loud: Striving for My Best Life With IPF
https://www.youtube.com/watch?v=Jy7f9wATrlI This video from Adam Karm titled “The Best Mom in the World” is all about the Packer family. Thirty-three-year-old Stephanie Packer was diagnosed with diffuse scleroderma in 2012 and now, as a result, suffers from pulmonary fibrosis. MORE: How to better manage your pulmonary fibrosis…
A project that aims to develop a new system to deliver therapies specifically to the lungs of patients with pulmonary fibrosis (PF) was awarded a research grant by the University of Pittsburgh’s Center for Medical Innovation. The funding was part of the center’s 2017 Round 2 Pilot Funding Program…
For most people, a new year brings new opportunities and often, a strong desire to bring on changes and try to achieve new goals. Some make those goals about physical changes, while others might look at social goals. Some may choose mental or emotional health improvements, such as striving for…
The IPF Catalyst Challenge is being held in Chicago, Illinois today as nine finalists make their final pitch in a competition for $1 million in funding for innovative, meaningful solutions to improve the quality of life for people living with idiopathic pulmonary fibrosis (IPF). Among the finalists is patientMpower, a…
As PF patients, we need all the help we can get, no matter where we are in the progression of this disease. Newly diagnosed patients often feel shocked, confused, angry, sad, or anxious, and desperately need information to figure out what is happening to them. It is normal…
Managing a chronic illness can be difficult. There are many different medications to take (often at different times), appointments to remember, symptoms to keep track of, and lots of information to absorb. Thankfully, living in a digital age means that there are numerous mobile apps that can help you…
The financial impact of living with a life-threatening illness like idiopathic pulmonary fibrosis (IPF) can be overwhelming for patients. Thankfully, in Canada, we don’t have as much of a financial burden when it comes to medical costs. However, patients living with IPF still have several expenses related to care.
Only a minority of patients with interstitial lung disease (ILD) swiftly receive a correct diagnosis, while more than half are misdiagnosed at least once, finds a Pulmonary Fibrosis Foundation (PFF) survey of 600 ILD patients. Meanwhile, patients go through invasive and costly diagnostic procedures — often without the desired result.
The Pulmonary Fibrosis Foundation plans to expand its U.S. Care Center Network from the existing 45 facilities, which provide diagnosis and treatment. The network started with nine sites when it was launched in 2013. The foundation wants to see enough centers so 90 percent of patients in urban areas…
