This is an important topic that hits the mark with many people living with Pulmonary Fibrosis (PF), and their caregivers. The world in which a PF patient lives can be a lonely place. Before being diagnosed they have probably never even heard of PF. If the diagnosis is Idiopathic Pulmonary Fibrosis, the first web search when they get home from the doctor's office is full of nothing but doom and gloom. Treatment options are very limited and the only hope for a cure is a lung transplant, and not many who need new lungs actually have the opportunity to receive them. So yes, the mental side of living with a rare and often terminal disease is something that should be addressed.
Here is the audio of Dr. Trombello's presentation:
And here is the .pdf he was talking from.
The audio is much better this time around. I purchased a microphone designed for sharing conferences and it really helped. If we want to improve on this audio, we will have to upgrade to a wireless microphone and receiver. That would be nice, but way out of budget.
Following Dr. Trombello's presentation, we broke into a couple of smaller groups, one for patients and one for caregivers, where we could talk about our personal issues and offer each other support. This was the most important part of the meeting, getting together and being there for each other.
If you would like to attend a support group in your area, the Pulmonary Fibrosis Foundation has a tool that you can use to do so. PFWarrior.com is another great resource for finding support groups in your area.