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    • #32668
      Gunpreet Pal
      Participant

      My dad and dad’s brother both had ipf. Also their great grandfather suffered from dry cough and dyspnea in his last days. What is your take on this?

    • #32669
      Maya
      Participant

      I think the understanding is that there is a genetic predisposition to IPF. I think familial IPF provides evidence for this. Research indicates that both genetic predisposition and environmental factors contribute to the risk of IPF and other idiopathic interstitial pneumonias.

       

       

       

    • #32671
      Norman Wendth
      Participant

      I have been told there is “probably” a genetic link. My grandfather, father, paternal aunt, two paternal cousins, and I all have IPF, so my family believes it.

    • #32674
      John Kane
      Participant

      My mother died of IPF at age 72.  Was diagnosed 3 years ago and am now 72.  Am the oldest of 4 children, and the only one left. One of them died of IPF.

    • #32675
      Jerry Genesio
      Participant

      I was diagnosed with IPF two years ago at age 81. My mother had the very same symptoms but her disease was never named. She was diagnosed with “lung problems – possibly lupus” at age 82 and lived to be 90. I am absolutely convinced IPF can be genetic.

    • #32677
      Richard Wormser
      Participant

      I was diagnosed with IPF four years ago. My father died from this disease in 1995 and my brother past away last week. There seems to be a genetic component in our family and I am  going for genetic test in a few weeks. Not sure what they will do. I asked for testing when I was first diagnosed but they only told me my telomers were shorter then normal for my age.

    • #32680
      Bonnie Thompson
      Participant

      I was diagnose with supersensitivity pneumonitis and PF a year ago.  I did have a CT scan 3 years before that for broken ribs and that showed lung scarring, so I’m not sure how long I’ve had PF.  Last week my sister who was 72 died of the same illnesses.  I am unaware if COPD is in any way related, but my Mother had that. (Perhaps an inherited weakness leading to a different result.). Would like to know if anyone has seen an inherited connection between COPD and PF.

    • #32685
      Roger Cecil
      Participant

      My sister died in 2010 from COPD at age 60 (heavy smoker).   My older brother was diagnosed with IPF in 2016 and had a double lung transplant 8 months later, and is ok, but in a weakened condition now (Parkinson’s disease) from agent orange exposure.  My father always had lung problems.  I was diagnosed this past August with IPF, and blood tests revealed very rare GPA Vasculitis which seems to be attacking my lungs.

      So….I think there is a genetic component to IPF, but also think environmental and other health issues play in to it.  Right now, I’m off of the anti-rejection drugs except for low dose Prednizone.  Will have more blood tests next month to see if I need to go back on the other anti-rejection drug.  As a side note, other than some shortness of breath, I feel pretty darn good.

      Roger

    • #32686
      Phil Ryan
      Participant

      When I was first diagnosed with IPF I volunteered to participate in a study that was being conducted out of Colorado. However, I was disqualified after my sister (my only close relative still living) declined to participate. Turns out, they were studying the genetic link for IPF.

    • #32691
      Gunpreet Pal
      Participant

      I hope more research is done to find out the cure of this horrendous disease.My dad got diagnosed with Fibrotic NSIP just two years back but it changed to ipf rather quickly and within 2 years he passed away.

      Also my dad lived on Delhi which is one of the most polluted cities around the world. May be that contributed to rapid accelation of the disease.

    • #32699
      Janet
      Participant

      <p style=”text-align: left;”>My dad, mom, and aunt all had forms of PF. My dad smoked and died at about 85, my aunt and mom in their 90s (no smokers). My older brother, a nonsmoker, 74, had a bout with hypersensitivity pneumonitis a few years ago but it never became chronic. I am 70 and a nonsmoker,  really struggling with NSIP, hoping I don’t make 80!</p>

    • #32702
      Bill
      Participant

      It seems to me that there IS a genetic component to IPF, at least is some cases.

      My mother passed from it, along with 2 of my brothers.  Then I was diagnosed with it… at age 64.  My mother and brothers lived till age 55 or so.  I had a double lung transplant about 1.5 years ago.

      My mother’s father passed from what regarded as complications of emphysema.  In those days,I don’t think they had the diagnostic tools to actually determine the underlying condition and looking at this picture, it’s highly likely he was actually suffering from IPF- all the symptoms he had are textbook.

       

      Bill McKee

      • This reply was modified 3 weeks, 4 days ago by Bill.
    • #32712
      Renee
      Participant

      My two brothers have died from IPF. I was diagnosed 2 years ago and my doctor keeps telling me that it isn’t a hereditary disease.  It appears to me if all of these reporting about different family members testing positive for IPF, then is would be familiar.

    • #32721
      Christie Patient
      Moderator

      Yes as others have mentioned, some forms of PF are familial and genetic. Other forms are random (aka “idiopathic”, the I in IPF) or caused by environmental factors. There is a test that can help predict likelihood of having the genetic form that looks at telomere length as a predictor. 23andMe is doing research on the genetic form of PF. You can find more information with a quick google search. 🙂

    • #32789
      Charlene Beck
      Participant

      my mother died of IPF at age 72, My older bro. just died at age 70- “Cardiac” but not conclusive— 

      My brother diagnosed w IPF about 6 yrs ago and anticipating a lung transplant.

      I was diagnosed 2 years ago w IPF and chest biopsy.

      My other sisters have a chronic cough although deny it and not diagnosed.

      why does it matter if it is all the same prognosis and same treatments whether familial or not….?   I pray for a way to recover.

      any one know about using Fungi for lung health?

       

      Chyna

       

       

    • #32790
      Richard Wormser
      Participant

      It matters because I have children.

    • #32791
      Renee
      Participant

      Exactly Richard, it does matter. Our children and grandchildren are in danger of having this terrible disease. I don’t want my granddaughter and her offspring to be worried about it. My son has passed so that leaves my worries about our little girl and her future.

    • #32793
      Gunpreet Pal
      Participant

      It matters to me as well.I’m really worried about my family and myself. This disease is really cruel. Indepth research should be conducted to look upon its causes and cure. There is presently no sure shot prevention and cure to this disease. Only hit and trial method technique is really there. If the two approved drugs works well then that’s fine otherwise the disease progresses rapidly. My father experienced acute exacerbation only once and that was the end. It sends chills down my spine everytime I think about the suffering of the patient. My dad never complained but I could see his condition. Its suffocating and felling suffocating is terrible. I hope God helps us to find a cure sooner. Genetic factor should really be looked upon so that disease doesn’t really become dominant in generations.

    • #32796
      Connie Lum
      Participant

      I am one of 5 children, 2 older sisters and 2 younger brothers. 3 of the 5 have IPF. One of my brothers had a bilateral lung transplant 4 years ago. He did smoke, the other brother, the youngest has never smoked and is on oxygen 24/7. I have no symptoms and never smoked. I am the only female who has been diagnosed, my older sisters do not have it. My father had COPD on oxygen and had a chronic cough, he may have had it too but back then we did not have the technology. He died at 72. I have told my children so they can tell their healthcare providers. Seems to be at least a familial link here.

    • #32804
      Adele Friedman
      Participant

      My mother had some type of PF and she also had allergic bronchopulmonary aspergillosis.  I’m told it’s likely she had PF and the aspergillosis was an opportunistic fungal infection.  I had a ton of bloodwork done and was found to have ILD/PF as a result of Sjogren’s Syndrome.  I believe my mother may have had that too.  She had several symptoms that could indicate it.  So, my PF is not IPF: it’s caused by Sjogren’s. Other autoimmune diseases can cause it too, and it’s not uncommon for people to have more than one.

    • #32807
      Tom
      Participant

      My father passed from IPF. My brother and I, both in our 50’s, have IPF. We have funded studies looking at familial pulmonary fibrosis. I have little doubt about a genetic component. I am terrified for my children, nieces, and nephews. Hoping breakthroughs are soon to come.

    • #32808
      Thomas Johnson
      Participant

      For the sake if my four kids I hope IPF is not genetic.  I was diagnosed less than 24 months ago and despite taking OFEV and Esbriet over the past 19 months, my pulmonologist just yesterday referred me a palliative care doc, saying “we’re at a dead end.”  Although there has been no IPF in my family that I know of, my mother died at 93 of emphysema.  I believe my IPF is more a result of smoking >80 pack-years of cigarettes by age 46 than any other factors.

      • #32853
        Gunpreet Pal
        Participant

        Sending prayers for you.

        My dad was also referred for palliative care in the end. His CT reports came back hopeless. he had all sort of abnormalities on the CT. His lungs were almost invisible in the CT. Infact his both lungs completely collapsed but he survived 1 month after that which the doctor stated as his bonus time. I hope u feel better Johnson.

        U r in my prayers…

    • #32848
      Bruce F.
      Participant

      Here  is an article on familial IPF that covers some of the questions raised on this thread.

      I was diagnosed with IPF this spring.  As the son and grandson of IPF patients, and as the father of young adult children who May of may not have a genetic predisposition to develop IPF at some point, I have asked my pulmonologist about genetic testing.

      We are likely to pursue this at some point—my doctor  mentioned a lab in Canada that does this testing—but testing would follow genetic counseling and education.

      My kids are in their early twenties, so we do not feel the need to act on this at the moment.  I am very interested in adding data to studies about familial IPF.

      Best wishes to all—

      Bruce

      • #32907
        Linda Maguire
        Participant

        I went to National Jewish Health in Denver, CO 6 years ago for a 2nd opinion about my diagnosis of IPF.  At that time, they were doing a study of familial IPF.  Anyone interested in a possible genetic connection might contact them to see if they are still recruiting for the study.

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