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.