Does anyone know if IPF is genetic , I have just found out my cousin had IPF , was going to be referred for a lung transplant but sadly passed away before. I have 12 days until my consultant sees me. He was diagnosed 10 years ago , was fit healthy did not smoke .

In March this year I trekked to little Tibet , lots of training , so can not understand how this can happen. Have others been healthy and was then struck down by this ?

Kath x

7 Replies

  • I had a feeling that it was/could be genetic. There is a variant of PF that is FPF, familial PF. How a diagnosis would distinguish between the two types I haven't the faintest idea. Maybe, it just depends on the history.

    Worth mentioning to your consultant.

    Hope you continue to do so much. What/where is Little Tibet?


    K xxxx

  • It was in the Himalayas India side , trekked in little Tibet for springboard charity

  • You are joking right

  • I fail to see how you arrived at that conclusion.

  • I have IPF but did smoke years ago the consultant told me being an ex smoker wasn't the cause nothing I have done has brought it on. He said it could be genetic but is not absolutely sure I m 75yrs old and was diagnosed 2011 although the first symptoms started 2010.i was quite fit walked every day enjoyed the gym 3 times a week and when at first symptom of breathlessness started I went to my GP who referred me to hospital so the sooner that's done the better. My physical activities have reduced dramatically and I now have oxygen 24hrs which after starting 8mths ago am just coming to terms with.at my age I'm just really glad for each day. There are a couple of new drugs out that may slow the progression of IPF one is Pirfenidone and the other Nintedanib. Hope this helps Titchykath good luck.

  • I have IPF my mother did too,so they refer to it as familial ,they are still looking into the genetics of it,but no proof as yet.Sooki.

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