[Luke]

Hi Charlene,

As I  understand it (please note I am <span style=”text-decoration: underline;”>not</span> a doctor/researcher), familial IPF is relatively rare, although I recently read an article that said it might be a cause of as many as 20% of cases.

Research has identified several genes that likely contribute to IPF, but even in families who carry such genes, the ultimate cause is likely a combination of genetics and environmental factors. There is ongoing research in Australia (that my family is involved in) and the US that aims to identify more familial IPF genes as well.

My family has lost individuals (men and women) from several generations to IPF, so we refer to it as familial, but I don’t know of any criteria that officially makes it so. IPF is also difficult to diagnose and misdiagnoses in the past were common, so it can be hard to track familial IPF too far back. As far as I know there is also no genetic test available that can determine whether any of us carry a known IPF causing/contributing gene.

My family appears to possess varying intensities of IPF progression. My father passed less than two years after diagnosis but two of his cousins with IPF have survived nearly 15+ years and are still around.

I hope this helps.

Cheers,

Luke