Current and former smokers are at risk for a lung disease called pulmonary fibrosis, but many aren't aware of the threat, the Pulmonary Fibrosis Foundation says.
There is no cure for the disease, which affects more than 200,000 Americans.
A recent foundation survey found that more than 80% of smokers are unfamiliar with pulmonary fibrosis. This is a concerning statistic among a group disproportionately affected by the disease.
Both smokers and nonsmokers have little awareness of the disease, and nearly 9 out of 10 Americans don't know its symptoms: shortness of breath, a dry, chronic cough and fatigue.
Oh dear didn't know that. I have found many smokers aren't even familiar with copd which smoking is a common cause of. This shocks me more than anything else to be honest.
I heard about Pulmonary Fibrosis and the survival rate is not very high when diagnosed with it, 2-5years. It's a very scary disease. I try not to read so much about it, I will get even more concerned and scared. But I know that everyone should have a look at it. Thanks for sharing 2greys. 👍😘 hope you are well. Keep warm and safe 🙂
Please be careful Googling Pulmonary Fibrosis as a lot of information is out of date. Although it is a progressive lung disease and no cure there are medications now to slow it down. So a lot of websites say 3-5 years but people will often survive longer. I have PF, not caused by smoking as I never have smoked, and I was diagnosed in 2008. Life isn’t easy but my condition is stable and I have no intention of going anywhere soon!
I have pulmonary fibrosis caused by the treatment I had for AF . I had amiodarone, which is known to cause lung problems, and then dronedarone, which is safer. Unfortunately I developed pulmonary fibrosis, but currently I am stable. There are two kinds of PF, idiopathic pulmonary fibrosis, and PF caused by something that is detectable. IPF can be treated to some extent, but not cured. The prognosis these days is much better, and can give life expectancy of more than 10 years from diagnosis. PF from a known cause, like mine is not treatable, but does not seem to progress in the same way. It is not necessarily caused by smoking. I have never smoked. I still have the AF!
I too have Pulmonary Fibrosis. I was diagnosed 3 years ago.Mine is Idiopathic which I was told means "cause unknown ". My consultant told me not to Google this condition because ,as Angie says,a lot of the information is incorrect. My cough has improved this year but I do get breathless on effort. I just take things a day at a time.
My husband has Idiopathic Pulmonary Fibrosis and has never smoked a cigarette or anything else in his life. Aingeful is right. Unfortunately,in my husband's case he has deteriorated rapidly.
Sorry to learn that your husband has declined rapidly with his illness. I have emphysema and that has very quickly worsened although for many it is a slowly progressive disease. There will always be exceptions to the rule so to speak. Best wishes to you both.
Thanks CDPO16. I must admit he may not have declined so quickly if all his diagnostic appointments hadn't been cancelled when the pandemic first started. As a result it wasn't diagnosed until much of the damage had already been done. If he had been able to start Perfenidone back then it may not have come to this. Anyway it's all academic now and too late. My good wishes to you too.
My sympathy again. The pandemic has meant that many people with non covid illness have been left out. That must be hard to come to terms with. At least I had all tests and treatments possible long before covid.
So sorry about your loss.I was diagnosed 12 months ago. No follow-up until September now diagnosed with pulmonary fibrosis and pulmonary hypertension but no referral to specalist unit. My advice is to insist on referral as stated in NICE guidlines. I still do not know if I qualify for nifedapine and am now on oxygen
I too have IPF not caused by smoking , as have never smoked in my life , can’t stand it. There are different types of this illness , where the prognosis is longer , When I was diagnosed I was given a prognosis of 5 years , I did ask if any of his patients had lived beyond this and he said No. .......A friends Mum has recently passed with this and she had it for many years , not even needing oxygen for trips out , I was amazed and envious of what she could achieve, but her illness was different to mine , even though it all came under the same umbrella. She also had 3 cats and a Parrot, all of which are not helpful to this illness. I Can see that I have declined this last year, but concentrate on what I can do , rather than the things I can’t. The only thing that could of helped is a double lung transplant , but that has been ruled out as he said , I wouldn’t survive the operation. Yes since 2016 there are medications to slow this disease down , but not everyone can tolerate them. I just want to live for as long as possible, and make the most of time with family when ever possible.
That's the best attitude Beachballs. I do get annoyed when some people assume that you have only got this condition because you are or have been a smoker and with IPF that's clearly not the case. My best wishes to you xx
I know all about it. My Husband smoked at least twenty a day for years. He gave it up in his forties but the damage was already happening. He died of IPF seven years ago next month on the 28th February. He was aged 74.
It does seem that smokers may be susceptible to developing PF so it is a shame that this is not information given in the education programmes designed to influence stopping the habit. The fact that there is no cure as such and that it is progressive does, I think, often produce a sense of hopelessness in some professionals. It must be difficult news to give patients. IPF was first diagnosed for me in 2006. You can do the sums on the prognosis. Yes, I am way outside the term usually presented but it’s been a rollercoaster of a journey and as has been outlined varied pathways are presented by all of us.
I did not smoke but have PF.
As outlined by 2greys post there is a need for greater awareness of the condition. A lot of work is going into that at present.
Smoking causes so many other illnesses,....I have IPF but haven't smoked like others who have answered. I'm on treatment so am hoping to last longer than 5 years, but as I have a lymphoma as well, dont know which one will grab me first. I haven't had the cough with it, just breathlessness and fatigue....
I was diagnosed in 2007 with Pulmonary Fibrosis because of Lupus a autoimmune disease which caused the damage to my lungs. I have had several medications to help stop the inflammation and 2013 I started to use ambulatory oxygen.
From having several meds for people with Rheumatoid Arthritis such as chemotherapy to now having biological drug (Rituximab) I have remained quite stable.
I do look after myself well and when it was possible I would go out to socialise with family and friends. I didn’t let pulling an oxygen cylinder around prevent me from going out.
The vaccine will be of great benefit to me (when I have it) as it will allow me to be able to go to church once again.
My faith in God has helped me to stay positive and not dwell on the negative such as how long will I remain here on earth with my family. Either way we will be rejoicing.
There is another autoimmune disease called Scleroderma which I was diagnosed with 10 years ago which can attack the lungs, a yearly check of heart and lungs are essential for early diagnosis of Pulmonary Fibrosis and/or Pulmonary Hypertension. Last year was the first year since diagnosis that I have not had my yearly appointment check. I did get my vaccine a couple of weeks ago, no problems with any side effects. Wishing everyone a very safe journey through these very scary times.
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