Being diagnosed with IPF is a somewhat unique experience. The chances of knowing someone with this disease are slim to none. You may possibly meet others with IPF at your pulmonologist or hospital but our current laws prohibit medical facilities from releasing names of other IPF patients. No two people will travel the same journey during this disease. You probably are interested in how other people cope after being diagnosed, the steps they take, the research they did, the possible trial treatment they are on, etc. All people with IPF need a good support system.
When you have a lot of questions, even about the practical aspects, it’s sometimes easier to talk to people who also deal with the same issues. Family, friends and the medical community are there to help you but it’s different for them because they sometimes don’t see or feel what you need. Support groups can be large and well-organized, online, or just a few patients in a small or large area. Combining the efforts of more than one will understandably help everybody in the group. Here are some of the advantages:
If there’s a support group in your area become a member immediately. Your pulmonologist or IPF treatment center (hospital) should be able to provide you with the name and telephone number of a local support group. If you are in the early stages don’t wait.
STARTING A GROUP - HOW IT WORKS
Don't re-invent the wheel. If there's no group locally, see if your search results reveal any support group nearby which you can contact and duplicate in your area.
Finding an IPF support group
First you should ask your pulmonologist or research center / hospital because there may be a small group in your area. If they can't help you, you can use the websites below to locate a support group. Another simple thing to do is go online and use a search engine like Google, Bing or Yahoo. Type in “IPF support group” and then your location or state. You may even find a group that everybody missed.
A great website with a list of support groups is the website of the Pulmonary Fibrosis Foundation in Chicago IL – Same story here if you know a support group and it’s not on their list – please let them know.
If you're in an area where there's no support group you may want to check out the Better Breathers Support Groups from the American Lung Association. They have a Lung support group system in place where many of the same topics will be discussed. If none of the IPF support groups is close they may be your answer.
UK Support groups: Breathe Easy
If you lose hope, somehow you lose the vitality that keeps life moving, you lose that courage to be, that quality that helps you go on in spite of it all. And so today I still have a dream.
The Trumpet of Conscience
Martin Luther King, Jr.
"Coming together is a beginning, staying together is progress, and working together is success."