Tuesday, March 22, 2016

Resources for the Pulmonary Fibrosis Patient

Communities for Support and Information:

PatientsLikeMe - The PatientsLikeMe (PLM) motto is "Live better, together! - Making healthcare better for everyone through sharing, support and research."

  • The PLM social forums are condition specific, so members share with others who share the same experiences.  The Pulmonary Fibrosis forum was a great help for me when I was living with IPF.
  • PLM has several tools that I found, and continue to find, helpful.  First are the tools that help track health.  PLM provides a single source where I can track my medications, test results, hospitalizations and progression of disease.  For example, here is my pre and post transplant lung capacity:

  • PatientsLikeMe has published over 70 research studies (I have participated in a couple of these) and has over 400.000 members with 1200 different conditions.  

Inspire - Together we're better.
  • Inspire is another condition specific social forum.  The pulmonary fibrosis forums are very active and good place to share and learn from others living with this horrible disease.
Medical Research Papers and Publications: After I was diagnosed with IPF I needed to learn all I could about the disease.  So with medical dictionary in hand, I pretty much read every available paper that had been published.  Warning, if you decide to go this route, there is a lot of information out there that does not offer much in the way of hope for someone with Idiopathic Pulmonary Fibrosis.  Papers published in the past few years have a brighter outlook than older studies.

Many of the papers that are recently published require a membership in one medical society or another to access.  You can often find an abstract of the study for free that will shed light on the basic information covered in the paper and sometimes you can find the paper for free from another source.  If you are really interested in reading the paper, you can always contact your pulmonologist and see if they can access it for you.

PulmCCM - "...all the best in pulmonary and critical care."

PulmCCM is a free compilation of medical journal papers relating to pulmonary and critical care issues.  PulmCCM is still the first place I look for data on pulmonary fibrosis and lung transplants.  

The American Thoracic Society - "We help the world breathe"

The ATS is where you can find the current guidelines on the treatment of IPF, and the Clinical Course and Prediction of Survival in Idiopathic Pulmonary Fibrosis.  You don't need a membership to read most of the documents relating to IPF.

Chest Journal - Official publication of the American College of Chest Physicians

You have to be a member to read newer papers on Chest, but there is still a lot of good information to be found for free if you dig for it.

Pilot For IPF - Pulmonary Fibrosis Identification: Lessons for Optimizing Treatment.

When I was first diagnosed, PILOT had the best materials for educating patients, friends and family of patients, and medical teams about IPF.  They are still a leader in providing pertinent information to the medical community.  A very important resource that you should check out.

A new (to me)  resource that I have found is The Pulmonary Fibrosis News. This weekly newsletter will help keep you up to date with PF news and research.

There are more, but these three will keep you busy for awhile.

Blogs Written by Doctors

Dr. Lederer does not post often, but when he does it is worth a read.  He has written two posts that are pretty much mandatory reading for the IPF patient -  "I was just diagnosed with Pulmonary Fibrosis. What do I do now?" and "The Internet Said I Have 3 Years to Live" .


The Pulmonary Fibrosis Foundation: The non-profit organization providing help and information for the Pulmonary Fibrosis patient.  

The PFF is a major contributor in the effort to raise awareness of Pulmonary Fibrosis in the community and providing information to the  patient.  They have identified created a list of medical centers that specialize in the treatment of pulmonary fibrosis and sponsor PF support groups across the nation.

The PFF has just published the videos from last year's PFF Summit.  I have not yet had the time to watch these, but browsing the speakers and titles of the presentations makes me want to find the tine soon.

The Pulmonary Fibrosis Foundation also has an informative Patient Information Guide that you might find helpful.

PF Warrior is a growing network of PF patients, caregivers and medical professionals.

ClinicalTrials.gov: This is where you go to find a clinical trial.  There is more progress to be made in the treatment of IPF and clinical trials is where that progress is going to be made.

MyMedSchedule.com is the tool I use to track and organize my medications.  A very handy tool when doing the weekly pill sort, and for keeping track of your medication history.

This is just the beginning of this list.  There are many more resources for the pulmonary fibrosis patient on the web.  I will continue to add to this list as I have time, or as you recommend sites.

1 comment:

  1. A comprehensive list for the patient to search out. How nice that you put it all here.