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Possibly genetic cause for my ipf
I’m still not 1 year after my formal ipf diagnosis but was made aware of the genetic component of some ipf patients due to DrDuckworths research at Exeter University. . My own consultant at Aintree University Hospital has agreed to do genetic screening on me but the results will take about a year. I really want to give my kids the chance to make any lifestyle adjustments that can improve their chances of a normal longer life.
It turns out I was maybe correct in being insistent on getting the tests as I was speaking with my younger brother last week and he has exactly the same symptoms I started with, breathless after walking uphill and catarrh in the morning.
Bugger.
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5 Replies
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My pulmonologist concentrates in interstitial lung diseases and has indicated I might be experiencing FPF instead of IPF, where the first F stands for familial. My mother died of it. My great-aunt died of some mysterious interstitial lung disease (years ago now) which may well have been pulmonary fibrosis. So I am pretty certain that FPF is the correct diagnosis for me. The issue of possible inheritance immediately surfaces. My therapist advises me that I should make my children aware that there is an apparent vulnerability in the tree, but there are many confounding or contributing factors, so self-blame is not appropriate. They are adults and will find their way. I have to be forthright about all this with them but I am not going to beat myself up about the potential.
All that being said, I can completely understand your concern for your brother. He probably fully understands the (evident) risk for an eventual FPF diagnosis. It isn’t your fault.
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I have the same worries about passing on to my kids, as well, but in my case I have absolutely no doubt that IPF can be genetic. Given that I have it and my grandmother, mother, and sister have all died from it; I doubt anyone can convince me that it is not. Note, I am not saying that it is genetic in all cases, but in my case, it is rather obvious that it is. Good luck.
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I was diagnosed in January 2017 with no known family history of idiopathic pulmonary fibrosis (IPF). Last year that changed. One of my younger brothers was diagnosed with IPF. That suggests the possibility of familial pulmonary fibrosis. I did write about it in a column last Fall. https://pulmonaryfibrosisnews.com/columns/new-twist-journey-familial-idiopathic-pulmonary-fibrosis/
I would also suggest you research short-telomeres (https://teamtelomere.org/) to learn more about the possible link to IPF.
Sam…
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My paternal grandfather was the first (that we know of) to die with IPF. He had 12 children, and of the 7 who lived to adulthood, two died with IPF—one being my father. Of the three in my generation with IPF, one is deceased. Each of the two of us still fighting is the child of one of the generation two victims.
I’ve had physicians tell me they “doubt” that IPF has a genetic element. There may well be more than one type, but I am firmly convinced that my IPF is genetic. My children are testing.
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My Pulmonologist has referred to my PF as being familial as well. My younger brother had Sarcoidosis,
another lung disease, which led to his receiving a double lung transplant in 2007
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