Guest guest Posted August 17, 2009 Report Share Posted August 17, 2009 Beth, Am I imaging this (or is it the OD) but it seems to me that there are quite a few people(a lot of newbies) around the age of 50 and then an older group about 65 and older? How do you think this plays with your doctor who said true IPF is for the older crowd and the younger ones are NSIP or others? Dyane Phoenix 53 IPF 02 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 17, 2009 Report Share Posted August 17, 2009 Hi Dyane Not sure about your Doc there but My doc's here take about 10 years to come up with a DX that they will stick with. I got my DX from UWMC and since then I have had three Docs change my DX now i am back to IPF Walt on Whidbey IPF,Nsip.Uip. 06 Courage doesn't always roar. Sometimes courage is the quiet voice at the end of the day saying, "I will try again tomorrow.†Subject: Age groupsTo: Breathe-Support Date: Monday, August 17, 2009, 12:09 PM Beth,Am I imaging this (or is it the OD) but it seems to me that there are quite a few people(a lot of newbies) around the age of 50 and then an older group about 65 and older? How do you think this plays with your doctor who said true IPF is for the older crowd and the younger ones are NSIP or others?Dyane Phoenix 53 IPF 02 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 17, 2009 Report Share Posted August 17, 2009 Walt, I understand, sometimes I wish they would just throw a dart at a dartboard and get it over with! LOL Dyane Phoenix IPF 02> > > Subject: Age groups> To: Breathe-Support > Date: Monday, August 17, 2009, 12:09 PM> > > Â > > > > Beth,> > Am I imaging this (or is it the OD) but it seems to me that there are quite a few people(a lot of newbies) around the age of 50 and then an older group about 65 and older? How do you think this plays with your doctor who said true IPF is for the older crowd and the younger ones are NSIP or others?> > Dyane Phoenix 53 IPF 02> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 17, 2009 Report Share Posted August 17, 2009 Dyane, What my doctor has said is not quite that simple. What he has told me and what I have read elsewhere is that true IPF, in other words pulmonary fibrosis with a completely unknown cause is extremely rare in those under 55-60. That lung scarring in younger people (especially women) is almost always attributable to some knowable cause. Things like auto-immune disease, exposure to a toxic substance or drug that causes scarring or some other disease process that causes it. NSIP is known in any age group as are other ILD's that cause fibrosis. In my case it was known that I had NSIP from the time of my biopsy. It was not known at that time what had caused it. After I moved down here to NC my doctor at Duke aggressively pursued the symptoms that were indicitive of connective tissue disease. Now that we know I have dermatomyositis, we know what caused my lung condition. Hopefully the Imuran I am taking now will control the progress of the DM and the lung disease also. As to the membership....remember our membership is not a statistically representative group of our disease. I think our membership is skewed younger than the general population of those with this disease. I don't think I'm going to insult anyone when I say that folks older than say 70-75 are not typically as comfortable with this medium (internet support group) as those who are somewhat younger. We of course have many older members who are completely comfortable and I wish we had more. We have members in their late 20's and early 30's and we have members who are 80+. We all have our lousy lungs in common and we're all in this together! Beth Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 To: Breathe-Support Sent: Monday, August 17, 2009 3:09:26 PMSubject: Age groups Beth,Am I imaging this (or is it the OD) but it seems to me that there are quite a few people(a lot of newbies) around the age of 50 and then an older group about 65 and older? How do you think this plays with your doctor who said true IPF is for the older crowd and the younger ones are NSIP or others?Dyane Phoenix 53 IPF 02 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 17, 2009 Report Share Posted August 17, 2009 Beth,You are right of course. I guess maybe I'm keying on many newbies in our age range. I'm really hoping that when I go to NJH in November I can get more answers. I'm so tired lately that I want to make sure I'm doing all I can for "my" disease. Very angry at IT lately. ThanksDyane Phoenix IPF 02>> Dyane,> What my doctor has said is not quite that simple. What he has told me and what I have read elsewhere is that true IPF, in other words pulmonary fibrosis with a completely unknown cause is extremely rare in those under 55-60. That lung scarring in younger people (especially women) is almost always attributable to some knowable cause. Things like auto-immune disease, exposure to a toxic substance or drug that causes scarring or some other disease process that causes it.> NSIP is known in any age group as are other ILD's that cause fibrosis.> > In my case it was known that I had NSIP from the time of my biopsy. It was not known at that time what had caused it. After I moved down here to NC my doctor at Duke aggressively pursued the symptoms that were indicitive of connective tissue disease. Now that we know I have dermatomyositis, we know what caused my lung condition. Hopefully the Imuran I am taking now will control the progress of the DM and the lung disease also.> > As to the membership....remember our membership is not a statistically representative group of our disease. I think our membership is skewed younger than the general population of those with this disease. I don't think I'm going to insult anyone when I say that folks older than say 70-75 are not typically as comfortable with this medium (internet support group) as those who are somewhat younger. We of course have many older members who are completely comfortable and I wish we had more. > > We have members in their late 20's and early 30's and we have members who are 80+. We all have our lousy lungs in common and we're all in this together! > > Beth> Moderator> Fibrotic NSIP 06/06 Dermatomyositis 11/08> > > > > ________________________________> To: Breathe-Support > Sent: Monday, August 17, 2009 3:09:26 PM> Subject: Age groups> > > Beth,> > Am I imaging this (or is it the OD) but it seems to me that there are quite a few people(a lot of newbies) around the age of 50 and then an older group about 65 and older? How do you think this plays with your doctor who said true IPF is for the older crowd and the younger ones are NSIP or others?> > Dyane Phoenix 53 IPF 02> Quote Link to comment Share on other sites More sharing options...
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