Hi There - does anyone out there have the Idiopathic form of Fibrosing Mediastinitis? I was recently diagnosised with Idiopathic Proliferative Fibrosing Mediastinitis (IPFM) - the rarer of the the two types of FM. So, not only do I have a rare disease, I have the rare form of a rare disease!
Thankfully, it has not impacted my quality of life too much (yet!?!?!) I’m just wondering if this is just the begining or was I spared the major complications that so many of you are suffering from. I would love to chat with someone else who has IPFM.