ask: Just found out I have IPF ..support group help
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Anonymous
February 13, 2012 - 2:36pm
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just looking for any kind of help regarding this disease. Have no idea anything about it and it's very scary
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I can understand your fears. I will offer you some links to information that may be helpful to you.
The EmpowHER Idiopathic Pulmonary Fibrosis home page
http://www.empowher.com/condition/idiopathic-pulmonary-fibrosis
offers information. There doesn't appear to be a Idiopathic Pulmonary Fibrosis Group, but you may want to start one.
The Pulmonary Fibrosis Foundation website
http://www.pulmonaryfibrosis.org/ipf
offers an explanation of what idiopathic pulmonary fibrosis is, the prevalence, symptoms and quality of life with IPF articles.
I hope that your fears will be somewhat lessened once you learn more about this condition.
Maryann
February 13, 2012 - 5:38pmThis Comment
Maryann
February 13, 2012 - 6:24pmThank you so much for taking the time to reply to my questions. I will check out the info from above. I'm still in the doctor/testing stage - waiting for appt. with PF guru in Hershey, Pa. so any ideas, suggestions, help is very much appreciated. Starting a support group myself will probably be down the road after I get myself better acquainted with this disease and the progresses on it
Joanne