Patient Support Group

The patient support group at the Simmons Center was designed for patients with IPF. At each support group meeting, a speaker either from or closely associated with the Simmons Center addresses a topic selected by patients. Examples of such presentations include:

• What is IPF?
• Using home oxygen
• Medications for IPF
• Importance of exercise
• Nutrition
• Genetics of IPF

As medical science progresses and treatments become more effective, people with IPF are living longer, more normal lives. Simmons Center professionals can help by sharing the experiences of other IPF patients, providing advice on exercise and travel, and connecting patients and their family members to other information sources.

Patient Support Group Meetings

February 4, 2008; Speaker: Dr. Robin Domsic - “How Your Joints and Bones Can Interact with your Lungs”

March 3, 2008; Speaker: Dr. Kevin Gibson - “The Importance of Oxygen”

April 7, 2008; Speaker: Deb Piontek – Exercise & Pulmonary Rehab.

May 5, 2008; Speaker: Dr. Luis Ortiz – Occupation and Lung Disease.

June 2, 2008; Dr. Naftali Kaminski & Simmons Center Faculty & Staff will provide an update on the proceedings from the American Thoracic Society Conference at the end of May.

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. Our support group is for patients with IPF.

Is the Simmons Center support group for me or my family?
The support group is open to patients, their family members, and friends. Basically, anyone interested in the disease IPF is welcome to attend.

What will I be asked to do at a support group?
The best way to determine if a support group is for you is to attend a meeting. 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. 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.

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 us and we will bring up the topic.

Can I suggest a topic area that I don't understand?
ABSOLUTELY!

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