The Daniel and Joan Beren Pennsylvania Idiopathic Pulmonary Fibrosis State Registry
 

The Daniel and Joan Beren Pennsylvania Idiopathic Pulmonary Fibrosis State Registry
Talk to a PA-IPF Coordinator by calling the PA-IPF Hotline  1-866-922-4IPF
A project of the University of Pittsburgh, University of Pennsylvania, Pennsylvania State Miton S. Hershey Medical Center, Temple University, Geisinger Medical System
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Support Groups

 
As medical science progresses and treatments become more effective, people with IPF are living longer, more normal lives. In a support group, you can share the experiences of other IPF patients, get advice on exercise and travel, and get connected to other information sources.

What is a support group?
A support group is just as the name says; a group of people with similar needs who meet together to learn more about their particular problem. If you are a patient, you may want to join a support group for patients with IPF.

Who can attend?
Most support groups are open to patients, their family members, and friends. Basically, anyone interested in the disease IPF is welcome to attend.

Are support groups for me?
The best way to determine if a support group is for you is to attend a meeting.

What will I be asked to do at a support group?
Different groups have different formats.  At the Simmons center, for example, the meetings are very informal and held in a conference room around a large table. Everyone is asked to sit around the table, and introduce himself or herself, and share his or her story and experiences. This includes how long he or she has had IPF, who his/her doctor is, any medicines being taken, how he/she is doing, and any special concerns. At each support group meeting, we have a speaker either from or closely associated with our Simmons team speak about a topic selected by patients. Examples of such information include informal presentations on What is IPF?, Using Home Oxygen, and Medications for IPF.

What if I am afraid to ask a question?
The forum for the meeting is very informal, so you should never be afraid to ask a question. However, if you are still uncomfortable asking a question, send it to your support group leader and they will bring up the topic.

Can I suggest a topic area that I don't understand?
ABSOLUTELY!  If there is a topic you'd like more information on or if you have a question, you should always fell free to ask at the meetings.

Where do I find a support group?
Contact your local center for meeting times and dates.

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