How I found myself in the Pulmonary Fibrosis Community
In 2003 my mom was diagnosed with a disease we had never heard of - Idiopathic Pulmonary Fibrosis. She was very late in the disease (after having been mis-diagnosed for many years). She was given 2 years to live. Due to her positive attitude and our way of attacking any illness or medical problem she had, we had 6 wonderful years together. Shortly before her death, I joined an online PF support group for caregivers. We had spent nearly 6 years doing the PF journey alone. It was so nice to have someone else to talk to who knew what I was going through. Mom passed away a month and a half later and my support group friends saved me. They got me through the rough patch. They also gave me a reason to stay active in the PF community. I was able to talk to other new caregivers and help them through this journey. The night mom died, I had vowed that I would help patients and caregivers and that her fight and her death would not be in vain. Since then, I have become the owner/moderator of many online support groups myself. I stay active in the PF community, speaking at public events - learning at public events. I am active in our local face to face group as well. I am happy to be able to help others - patients and caregivers - through this process. The past 12 years have proven to be an invaluable education, not only in PF, but also in helping others.
Find people with Pulmonary Fibrosis through the map. Connect with them and share experiences. Join the Pulmonary Fibrosis community.