Shining the spotlight on pulmonary fibrosis

Posted September 17th, 2014 by

 

You may have seen our post on Pulmonary Fibrosis Awareness Day, but did you know September is also Pulmonary Fibrosis Awareness Month? The Pulmonary Fibrosis Foundation (PFF) wants everyone to shine the spotlight on idiopathic pulmonary fibrosis (IPF), and many PatientsLikeMe members have already shared their stories – Lori documented her journey from diagnosis to transplant in a 4-part blog interview series, along with Barbara and John.

We also wanted to pause for just a minute to recognize PatientsLikeMe member Bryan. He joined the community in 2013 after being diagnosed with IPF and was an inaugural member of our Team of Advisors.

We are sad to share that last month, Bryan passed away, and all of our thoughts are with his family, friends and fellow PatientsLikeMe community members. But even though Bryan may no longer be with us, his memory and data live on. The experiences he shared will help drive change in IPF and in healthcare. We can think of no better way to pay tribute than to share his recent video with everyone. Bryan, you will be missed.

In Memoriam
Bryan Kincaid


(1947-2014)


2 Comments

  1. I just came back from ICLAF 2014 in Mont Tremblant, Quebec. The International Colloquium for Lung and Airway Fibrosis is held every two years — this being the 18th ICLAF.

    We heard from and met people from all over the world. Researchers, scientists, clinicians, patient support groups. It was like attending the United Nations of Pulmonary Fibrosis and am seriously reconsidering renaming IPF as INTERNATIONAL Pulmonary Fibrosis.

    We need all the attention we can get. We need to hear from patients and caregivers, from other friends and loved ones who are currently watching their loved one struggle with this disease BUT ALSO from those who have been impacted by the loss of a loved one.

    With both the Canadian Pulmonary Fibrosis Foundation (CPFF) and the Pulmonary Fibrosis Foundation (PFF) attending ICLAF, we married two great attention grabbing activities to increase awareness. To see more about CPFF’s #kissIPFgoodbye campain, visit http://www.cpff.ca or go directly to the Kiss IPF Goodbye campaign page at http://www.canadianpulmonaryfibrosis.ca/kiss-ipf-goodbye/. To see photos and other activities at ICLAF go to the CPFF Facebook page (https://www.facebook.com/pages/Canadian-Pulmonary-Fibrosis-Foundation/238096836052).

  2. I have IPF,diagnosed 7years ago, i am 85 years old and still getting about, albeit slowly as I also have long standing Periferal Neuropathy.
    I am not too sure that it is a good thing to immerse oneself in other peoples experiences mabe a little knowledge can be a dangerous thing. When I was first diagnosed with IPF I read that life expectancy was two to five years. I keep meaning to settle my affairs as it appears I am past my sell- by date. I am ressisting trying to find out how the end will come.

    Anybody else care to comment on these lines?

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