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:

1. Fellow patients can answer questions often from an experienced angle.
   Group members may bring up news, practical information and questions you haven’t thought about.
2. You can speak openly about how to handle your emotions etc. because everybody in the group goes through them as well. You’ll find better listeners and people who understand and are supportive.
3. Support groups can provide access to the most current information regarding available treatments.
4. The group can invite speakers on topics they feel are important.
5. The group becomes a new social network. (Very important on days when you’re feeling a bit down.)
6. As a group you will be in a better position to get your opinion heard.
7. Medical professionals who are part of support groups will give professional assistance.
8. On-line support groups have an advantage in that any time of the day you can anonymously give and get support and responses from a broader audience. If you are experiencing side effects from therapy and have difficulty leaving your home, an online community can be the simplest, most effective way to get the support you need during treatment.

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.

1. Find a few other patients who share your interest in starting a group by leaving a flyer or letter with pulmonologists, IPF specialists, research centers and hospitals, with your contact information. Include your first name, phone number, and any other relevant information.
2. Ask the assistance of any professionals who may be specialists in IPF and are willing to assist you in your efforts.
3. Once you have a few members, find a suitable meeting place and time. Keep in mind that some people may still be working. Try to obtain free or very low cost meeting space at a local church, library, community center, hospital, or social service agency.
4. If you want to make it more “official” then you may want to discuss and draft a group purpose or mission statement with a few members, and maybe a name for your group. Ask at your first meeting for additional feedback and ideas from members.
5. If it’s going to be a large group consider splitting it up into smaller groups. Keep in mind that smaller groups where people know each other better, are usually more effective than large impersonal groups.
6. Set up a monthly plan, how often you will meet, what items will be discussed and who will be invited to talk about specific items.
7. Leave enough time for group members to describe their interests and work, and allow others the opportunity to share their view of what they would like to see the support group do. Socialize!!!!
8. Share and delegate the work and responsibilities in the group. Who will be phone contact person for the group? Will emails go out before meeting and who will take care of that? Consider additional support members who can offer assistance in making the group work.

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.

www.pulmonaryfibrosis.org/SupportGroups

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.

http://www.lungusa.org/lung-disease/copd/connect-with-others/better-breathers-clubs/

UK Support groups: Breathe Easy

http://www.lunguk.org/supporting-you/breathe-easy/

ONLINE:

PatientsLike Me

https://www.patientslikeme.com/

Facebook

Pulmonary Fibrosis

Pulmonary Fibrosis Awareness 

Pulmonary Fibrosis Spread Awareness

Pulmonary Fibrosis Foundation     and many more

Inspire

https://www.inspire.com/

Daily Strength

http://www.dailystrength.org/c/Pulmonary-Fibrosis/support-group 

World

https://www.rareconnect.org/en



DREAMS

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.

TEAM 

"Coming together is a beginning, staying together is progress, and working together is success."

Henry Ford