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PA-IPF Registry home  

The Daniel and Joan Beren
Pennsylvania Idiopathic Pulmonary Fibrosis
State Registry

A project of the University of Pittsburgh, University of Pennsylvania, Penn State Milton S. Hershey Medical Center, Temple University, Geisinger Medical System

PA-IPF Hotline  1-866-922-4IPF (4473)


Risk factors for IPF
Diagnostic test for IPF
I've been diagnosed with IPF, now what?
What if I need oxygen?
Exercise and IPF
Find a support group
How will IPF affect my diet?
I'm afraid of death, what can I do?
Will my children get IPF?

I've been diagnosed with IPF -- now what?

In the words of one patient, there is "emotional fallout" after an IPF diagnosis. She states: "Initially, I was in shock. I was depressed. I couldn't believe they were telling me what they were telling me, thinking I was just going to die very soon and very scared of death."

There may be other emotions mixed in with your depression; jealousy of those who are healthy; anger at God or fate; fear of an unknown future.

The first thing you should know is that all of these feelings are perfectly normal.

One woman offers the following advice: "Allow yourself to grieve, allow yourself to be angry and to feel all those emotions. Find out as much as you can about the disease. Take control. You have to know as much as, if not more, than your doctor. Knowledge is power."

Self-education is a common theme among IPF patients. Another patient said, "I needed to find out information when I was diagnosed. I spent my life in the library."

Social support systems also play an important role in dealing with an IPF diagnosis. "Get a doctor that you have a good rapport with," one patient advises.

"Get in a support group. Talk with your friends and family about it. Get counseling if you need it and if you do, try to find a counselor who specializes in chronic illness. Pray. And try to live your normal life. I don't think about this disease every day. If I did, it would drive me crazy. At first you're going to do that. Just talking to people helps. It makes you feel like you're not isolated."

If you can find a support group in your area, it would be a good idea to give it a try. The IPF support group at the University of Pittsburgh has held meetings on subjects as diverse as oxygen therapy, medications, and an introduction to IPF. These meetings present a perfect opportunity to network with others who are dealing with the same issues, as well as a chance for you to educate yourself with the firsthand testimony of others.