Do you know someone with pulmonary fibrosis? Thanks to the Pulmonary Fibrosis Foundation, today – Sept 7th – is dedicated to raising awareness about this condition and sharing the stories of patients living with PF. It’s Global Pulmonary Fibrosis Awareness Day, and we want to do our part to help raise awareness of this lung condition. Pulmonary fibrosis (PF) causes scarring and thickening in deep lung tissue over time.
We recently announced that the PatientsLikeMe community has grown to include more than 1,000 patients with idiopathic pulmonary fibrosis (IPF). IPF refers to cases where the cause of the condition is unknown, and it affects over 100,000 people in the United States alone.[1] Our collaboration with Boehringer Ingelheim has made the acceleration to enhance our community for PF patients possible. So for Global Pulmonary Fibrosis Awareness Day, we’d love to share what we know about this condition, people’s experiences with it, and the stories behind the people living day in and day out with the disease.
More and more IPF patients are sharing their real world experiences on PatientsLikeMe, monitoring their own health while connecting with others just like them. We’ve done a series of blog interviews with our members, including Lori, Kim, Jeff and Ian, as well as other patients like Sarah and Keith.
Beyond the stories, our members are sharing experiences about what it’s like to live with their IPF. Here’s a snapshot of what we’ve learned about their real-world experiences, including a quote from Lori, an interviewee and amazing individual who was diagnosed with IPF in 2011 and has been connecting with PatientsLikeMe members ever since.
As the PFF says, today is about sharing stories and raising awareness of a condition that affects over half a million Americans. You can help by sharing your story and experience here and through campaigns run by the Pulmonary Fibrosis Foundation and the Coalition for Pulmonary Fibrosis.
Every story, every voice, and every experience matters when coming together to make a difference for pulmonary fibrosis.
[1] http://ghr.nlm.nih.gov/condition/idiopathic-pulmonary-fibrosis
Hi! I just got reading through a few of your posts and I had a quick question. I am involved in the cancer community and I was hoping you could email me back when you get the chance. Thanks!
Emmy