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Monday, June 27, 2016
Support for patients and families w/ILD`s
My husband is 50 years old and was diagnosed this past year with NSIP. He is being treated with prednisone & cytoxin. He seems to be getting sicker faster on the medications. He is getting depressed. So am I. Is there any kind of support groups for families and patients who are struggling through this disease of so many unknowns and unsuccesses in terms of treatment? A once pleasant and positively happy man has become miserable and dreading the future in what seems like overnight. We`ve been married for 32 years. I know him well. This is not him or his usual self at all. Any suggestions. I`m willing to start a support group if none exists. I feel so helpless in this situation.
Some larger communities have support groups but often the first place to start with is the local branch of the American Lung Associationhttp://www.lungusa.org/lung-disease/copd/connect-with-others/better-breathers-clubs/. Other great resources are:
Pulmonary Fibrosis Foundation: http://www.pulmonaryfibrosis.org/groups.htm
Coalition for IPF: http://www.coalitionforpf.org
James N Allen, Jr, MD
Clinical Professor of Pulmonary, Allergy, Critical Care & Sleep Medicine
College of Medicine
The Ohio State University