Guest guest Posted November 30, 2008 Report Share Posted November 30, 2008 To everyone...It seems based on the on-line participants of Breathe-support that PF: 1. may effect more women than men 2. may effect more people from European ancestry Or..is it that ladies just like to talk more? and those ladies happen to be sort of "blond" I find it interesting that we have very few men who post...hey you may be lurking..but we don't know you. Also, so many of us in pictures have the same coloring be it "natural " or not. Just wondering ...it's probably a "blond" sort of question too! I'm one of them after-all. -- Z fibriotic NSIP/05 Z 64, fibriotic NSIP/o5/PA And “mild” PH/10/07 and Reynaud’s too!! No, NSIP was not self-inflicted…I never smoked! Potter, reader,carousel lover and MomMom to Darah and Sara “I’m gonna be iron like a lion in Zion” Bob Marley Vinca Minor-periwinkle is my flower Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 30, 2008 Report Share Posted November 30, 2008 Maybe I'm blonde and don't know it. What's the question? Zion wrote: To everyone...It seems based on the on-line participants of Breathe-support that PF:1. may effect more women than men2. may effect more people from European ancestryOr..is it that ladies just like to talk more? and those ladies happen to be sort of "blond"I find it interesting that we have very few men who post...hey you may be lurking..but we don't know you.Also, so many of us in pictures have the same coloring be it "natural " or not.Just wondering ...it's probably a "blond" sort of question too! I'm one of them after-all. -- Z 64, fibriotic NSIP/o5/PA And “mild” PH/10/07 and Reynaud’s too!! No, NSIP was not self-inflicted…I never smoked! Potter, reader,carousel lover and MomMom to Darah and Sara “I’m gonna be iron like a lion in Zion” Bob Marley Vinca Minor-periwinkle is my flower <!--[if !supportEmptyParas]--> <!--[endif]--> <!--[if !supportEmptyParas]--> <!--[endif]--> Barbara McDIPF, Sept 08Beautiful Western NC Let us not become weary in doing good, for at the proper time we will reap a harvest if we do not give up. Galatians 6:9 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 30, 2008 Report Share Posted November 30, 2008 Though I claim to have "blond" moments, I am a natural brunette. I think we have more women online because women tend to seek support and encouragement more than men. Just taking to the men with PF in the waiting room at UCSD, they get out less, hate to use the oxygen, and the last one I spoke to said he was waiting for the transplant and would rather die than have to live tethered to a tube. His exact words to me " I just can't let people see me like this," so his solution is to not go out and if he has to he goes without oxygen. Another man I know, (he just turned 80) has stopped eating because he is so depressed about using oxygen. His wife asked me to come and see if I could get him out of the house-I failed- and I doubt he makes it to January. I am so proud of the men on our board who realize that life is much more than what you look like and that true strength is fighting to live. R. (52) Sarcoid/PF 3/2006 Carlsbad, California Subject: PF demographics QuestionTo: Breathe-Support Date: Sunday, November 30, 2008, 9:16 AM To everyone...It seems based on the on-line participants of Breathe-support that PF:1. may effect more women than men2. may effect more people from European ancestryOr..is it that ladies just like to talk more? and those ladies happen to be sort of "blond"I find it interesting that we have very few men who post...hey you may be lurking..but we don't know you.Also, so many of us in pictures have the same coloring be it "natural " or not.Just wondering ...it's probably a "blond" sort of question too! I'm one of them after-all. -- Z 64, fibriotic NSIP/o5/PA And “mild” PH/10/07 and Reynaud’s too!! No, NSIP was not self-inflicted…I never smoked! Potter, reader,carousel lover and MomMom to Darah and Sara “I’m gonna be iron like a lion in Zion” Bob Marley Vinca Minor-periwinkle is my flower Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 30, 2008 Report Share Posted November 30, 2008 Women and Bruce like to talk more. lol I've wondered the same thing. I've even wondered geographically. For instance, to my knowledge, we do not have a single member from South Florida (Miami/Fort Lauderdale/West Palm). I have not found any concrete information, so will hypothesize a bit. I do not think it affects women more than men of the same age. Now, there are more older women than men due to lifespan being greater. So when you look at 60 or 65 and above you'll find more women. Also, I think men may be diagnosed slower because they start with greater lung capacity and they are more hesitant to see doctors in many cases. However, I did look at several transplant centers and the number of persons getting listed which of course includes all lung diseases and it was very near men vs. women the same as the general population. I think on the whole men may deal poorer with the disease and if you go to the caregiver board you'll think far more men have it than women because there will be so many more women caregivers. Men are far more hesitant then to look for support in my opinion and to want to share feelings on such a subject. So, my opinion is that it does not vary greatly by sex. As to European ancestry, race, origin and any of those issues, I think it would be extremely hard to tell. We do know that in the US, on the whole, African Americans and Hispanics do not get equal medical care. They don't go to doctors as much and probably not in many cases the same quality of doctor. But the same is true of economically disadvantaged whites. Each of us had to find a way to a pulmonologist, through testing and to diagnosis. Many of us still went a long time before diagnosis. I think its highly likely that any statistics or indications toward European ancestry are more a matter of diagnosis and medical care than related to the disease itself, although I have no way of proving that. I did look at those waitlisted at various locations for organ transplants. UCLA was 22% hispanic. UAB was 17% African American. UCSF was 9% African American, 15% Hispanic, 6% Asian. 20% of the transplants at UTSA were hispanics. Now, I'll toss out another one. Is it different based on the country or part of a country we live in. I highly suspect this to be so because of the exposures we have. But it would be equally difficult to prove. I think the building of some database information at the national level may help provide some indications on these issues, but it will still only reflect those who got diagnosed. So, my opinion is that it is not more female than male nor is it more European ancestry. But, I do think it was a very interesting question. You would definitely get an impression it was female from this forum. From visiting my pulmonologist or rheumatologist office you would conclude it was only European ancestry. Unfortunately too it does show what a small percentage of people ever find their way to this support group online. There are lots out there struggling to deal with it with no help. Disproportionately I imagine more men doing so and in turn thats putting more burden on female spouses. > > To everyone...It seems based on the on-line participants of > Breathe-support that PF: > 1. may effect more women than men > 2. may effect more people from European ancestry > Or..is it that ladies just like to talk more? and those ladies happen to > be sort of " blond " > I find it interesting that we have very few men who post...hey you may > be lurking..but we don't know you. > Also, so many of us in pictures have the same coloring be it " natural " > or not. > Just wondering ...it's probably a " blond " sort of question too! I'm one > of them after-all. > -- > > > Z 64, fibriotic NSIP/o5/PA > > > And " mild " PH/10/07 and Reynaud's too!! > > No, NSIP was not self-inflicted...I never smoked! > > > Potter, reader,carousel lover and MomMom to Darah > > > and Sara > > * " I'm gonna be iron like a lion in Zion " Bob Marley* > > *Vinca Minor-periwinkle is my flower* > > * * > > * * > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 30, 2008 Report Share Posted November 30, 2008 A few demographics as I look at those waitlisted in the US for transplants last year, a total of 1957 persons Ethnicity/Race-White 82.2%, African American 8.4%, Hispanic 7.4%, Asian 1.4%, Other 0.6%. Gender-54.1% Male, 45.9% Female. Primary Disease-Primary Pulmonary Hypertension 4.5%, Cystic Fibrosis 12.3%, Idiopathic Pulmonary Fibrosis 46.2%, Emphysema/COPD 33.5%, Other 3.5%. > > > > To everyone...It seems based on the on-line participants of > > Breathe-support that PF: > > 1. may effect more women than men > > 2. may effect more people from European ancestry > > Or..is it that ladies just like to talk more? and those ladies happen > to > > be sort of " blond " > > I find it interesting that we have very few men who post...hey you may > > be lurking..but we don't know you. > > Also, so many of us in pictures have the same coloring be it " natural > " > > or not. > > Just wondering ...it's probably a " blond " sort of question too! I'm > one > > of them after-all. > > -- > > > > > > Z 64, fibriotic NSIP/o5/PA > > > > > > And " mild " PH/10/07 and Reynaud's too!! > > > > No, NSIP was not self-inflicted...I never smoked! > > > > > > Potter, reader,carousel lover and MomMom to Darah > > > > > > and Sara > > > > * " I'm gonna be iron like a lion in Zion " Bob Marley* > > > > *Vinca Minor-periwinkle is my flower* > > > > * * > > > > * * > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 30, 2008 Report Share Posted November 30, 2008 That's funny Barbara! MamaSher, age 70. IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there! Re: PF demographics Question Maybe I'm blonde and don't know it. What's the question? Zion <ljz741 (AT) verizon (DOT) net> wrote: To everyone...It seems based on the on-line participants of Breathe-support that PF:1. may effect more women than men2. may effect more people from European ancestryOr..is it that ladies just like to talk more? and those ladies happen to be sort of "blond"I find it interesting that we have very few men who post...hey you may be lurking..but we don't know you.Also, so many of us in pictures have the same coloring be it "natural " or not.Just wondering ...it's probably a "blond" sort of question too! I'm one of them after-all. -- Z 64, fibriotic NSIP/o5/PA And “mild” PH/10/07 and Reynaud’s too!! No, NSIP was not self-inflicted…I never smoked! Potter, reader,carousel lover and MomMom to Darah and Sara “I’m gonna be iron like a lion in Zion” Bob Marley Vinca Minor-periwinkle is my flower <!--[if !supportEmptyParas]--> <!--[endif]--> <!--[if !supportEmptyParas]--> <!--[endif]--> Barbara McD IPF, Sept 08 Beautiful Western NC Let us not become weary in doing good, for at the proper time we will reap a harvest if we do not give up. Galatians 6:9 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 30, 2008 Report Share Posted November 30, 2008 Bruce ... I live in Oregon and I know of two other people who deal with our disease. There a scattered few (per our gathering last Father's Day) in WA. I've wondered about why going East there are more and more. Seems to be many of us in TX. MamaSher, age 70. IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there! Re: PF demographics Question Women and Bruce like to talk more. lolI've wondered the same thing. I've even wondered geographically. Forinstance, to my knowledge, we do not have a single member from SouthFlorida (Miami/Fort Lauderdale/West Palm).I have not found any concrete information, so will hypothesize a bit. Ido not think it affects women more than men of the same age. Now, thereare more older women than men due to lifespan being greater. So when youlook at 60 or 65 and above you'll find more women. Also, I think men maybe diagnosed slower because they start with greater lung capacity andthey are more hesitant to see doctors in many cases. However, I did lookat several transplant centers and the number of persons getting listedwhich of course includes all lung diseases and it was very near men vs.women the same as the general population. I think on the whole men maydeal poorer with the disease and if you go to the caregiver board you'llthink far more men have it than women because there will be so many morewomen caregivers. Men are far more hesitant then to look for support inmy opinion and to want to share feelings on such a subject. So, myopinion is that it does not vary greatly by sex.As to European ancestry, race, origin and any of those issues, I thinkit would be extremely hard to tell. We do know that in the US, on thewhole, African Americans and Hispanics do not get equal medical care.They don't go to doctors as much and probably not in many cases the samequality of doctor. But the same is true of economically disadvantagedwhites. Each of us had to find a way to a pulmonologist, through testingand to diagnosis. Many of us still went a long time before diagnosis. Ithink its highly likely that any statistics or indications towardEuropean ancestry are more a matter of diagnosis and medical care thanrelated to the disease itself, although I have no way of proving that. Idid look at those waitlisted at various locations for organ transplants.UCLA was 22% hispanic. UAB was 17% African American. UCSF was 9% AfricanAmerican, 15% Hispanic, 6% Asian. 20% of the transplants at UTSA werehispanics.Now, I'll toss out another one. Is it different based on the country orpart of a country we live in. I highly suspect this to be so because ofthe exposures we have. But it would be equally difficult to prove.I think the building of some database information at the national levelmay help provide some indications on these issues, but it will stillonly reflect those who got diagnosed.So, my opinion is that it is not more female than male nor is it moreEuropean ancestry. But, I do think it was a very interesting question.You would definitely get an impression it was female from this forum.From visiting my pulmonologist or rheumatologist office you wouldconclude it was only European ancestry. Unfortunately too it does showwhat a small percentage of people ever find their way to this supportgroup online. There are lots out there struggling to deal with it withno help. Disproportionately I imagine more men doing so and in turnthats putting more burden on female spouses.>> To everyone...It seems based on the on-line participants of> Breathe-support that PF:> 1. may effect more women than men> 2. may effect more people from European ancestry> Or..is it that ladies just like to talk more? and those ladies happento> be sort of "blond"> I find it interesting that we have very few men who post...hey you may> be lurking..but we don't know you.> Also, so many of us in pictures have the same coloring be it "natural"> or not.> Just wondering ...it's probably a "blond" sort of question too! I'mone> of them after-all.> -->>> Z 64, fibriotic NSIP/o5/PA>>> And "mild" PH/10/07 and Reynaud's too!!>> No, NSIP was not self-inflicted...I never smoked!>>> Potter, reader,carousel lover and MomMom to Darah>>> and Sara>> *"I'm gonna be iron like a lion in Zion" Bob Marley*>> *Vinca Minor-periwinkle is my flower*>> * *>> * *> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 30, 2008 Report Share Posted November 30, 2008 Barbara The question is does it disproportionately impact New York women transplanted to NC or is it just that New York women with it move south and then go to online forums. lol I'll toss another oddity out there. I mentioned South Florida earlier. Do we have any members here who actually live in New York City or in Los Angeles, itself. Texas and Pennsylvania sure seem to have their share. To everyone...It seems based on the on-line participants of Breathe-support that PF: > 1. may effect more women than men > 2. may effect more people from European ancestry > Or..is it that ladies just like to talk more? and those ladies happen to be sort of " blond " > I find it interesting that we have very few men who post...hey you may be lurking..but we don't know you. > Also, so many of us in pictures have the same coloring be it " natural " or not. > Just wondering ...it's probably a " blond " sort of question too! I'm one of them after-all. > -- > Z 64, fibriotic NSIP/o5/PA And " mild " PH/10/07 and Reynaud's too!! No, NSIP was not self-inflicted I never smoked! > Potter, reader,carousel lover and MomMom to Darah and Sara " I'm gonna be iron like a lion in Zion " Bob Marley > Vinca Minor-periwinkle is my flower > <!--[if !supportEmptyParas]--> <!--[endif]--> > <!--[if !supportEmptyParas]--> <!--[endif]--> > > > > > > > > Barbara McD > IPF, Sept 08 > Beautiful Western NC > > > > Let us not become weary in doing good, for at the proper time we will reap a harvest if we do not give up. Galatians 6:9 > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 30, 2008 Report Share Posted November 30, 2008 Ahhhhh. NOW it's clear. LOL Sorta reminds me of a saying someone I knew long ago (in Orange County CA, BTW) used to say: "Do you walk to work, or do you carry your lunch?" And the appropriate answer is "yes". ;-)Bruce Moreland wrote: BarbaraThe question is does it disproportionately impact New York womentransplanted to NC or is it just that New York women with it move southand then go to online forums. lolI'll toss another oddity out there. I mentioned South Florida earlier.Do we have any members here who actually live in New York City or in LosAngeles, itself. Texas and Pennsylvania sure seem to have their share. To everyone...It seems based on theon-line participants of Breathe-support that PF:> 1. may effect more women than men> 2. may effect more people from European ancestry> Or..is it that ladies just like to talk more? and those ladies happento be sort of "blond"> I find it interesting that we have very few men who post...hey you maybe lurking..but we don't know you.> Also, so many of us in pictures have the same coloring be it "natural" or not.> Just wondering ...it's probably a "blond" sort of question too! I'mone of them after-all.> --> Z 64, fibriotic NSIP/o5/PA And "mild" PH/10/07 andReynaud's too!! No, NSIP was not self-inflicted…I never smoked!> Potter, reader,carousel lover and MomMom to Darah and Sara"I'm gonna be iron like a lion in Zion" Bob Marley> Vinca Minor-periwinkle is my flower> <!--[if !supportEmptyParas]--> <!--[endif]-->> <!--[if !supportEmptyParas]--> <!--[endif]-->>>>>>>>> Barbara McD> IPF, Sept 08> Beautiful Western NC>>>> Let us not become weary in doing good, for at the proper time we willreap a harvest if we do not give up. Galatians 6:9>Barbara McDIPF, Sept 08Beautiful Western NC Let us not become weary in doing good, for at the proper time we will reap a harvest if we do not give up. Galatians 6:9 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 30, 2008 Report Share Posted November 30, 2008 Barbara Or when the mother next door to me at the lake would ask if I wanted Coke or Mountain Dew and I'd say " yes " . Now Jane would then try again, but her daughter Mona would just fix me a drink of half Coke and half Mountain Dew. Actually not nearly as bad as it sounds. lol To everyone...It seems based on the > on-line participants of Breathe-support that PF: > > 1. may effect more women than men > > 2. may effect more people from European ancestry > > Or..is it that ladies just like to talk more? and those ladies happen > to be sort of " blond " > > I find it interesting that we have very few men who post...hey you may > be lurking..but we don't know you. > > Also, so many of us in pictures have the same coloring be it " natural > " or not. > > Just wondering ...it's probably a " blond " sort of question too! I'm > one of them after-all. > > -- > > Z 64, fibriotic NSIP/o5/PA And " mild " PH/10/07 and > Reynaud's too!! No, NSIP was not self-inflicted I never smoked! > > Potter, reader,carousel lover and MomMom to Darah and Sara > " I'm gonna be iron like a lion in Zion " Bob Marley > > Vinca Minor-periwinkle is my flower > > <!--[if !supportEmptyParas]--> <!--[endif]--> > > <!--[if !supportEmptyParas]--> <!--[endif]--> > > > > > > > > > > > > > > > > Barbara McD > > IPF, Sept 08 > > Beautiful Western NC > > > > > > > > Let us not become weary in doing good, for at the proper time we will > reap a harvest if we do not give up. Galatians 6:9 > > > > > > > > > Barbara McD > IPF, Sept 08 > Beautiful Western NC > > > > Let us not become weary in doing good, for at the proper time we will reap a harvest if we do not give up. Galatians 6:9 > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 30, 2008 Report Share Posted November 30, 2008 See Bruce the trouble with that is your timeline is off....I went online and found this group 18 months before I moved south so back to your drawing board to rethink your hypothesis. In all seriousness though the demographic information we can glean from participation on this board is very limited. We have over 600 members currently. We don't know a thing about most of them. Only a couple of dozen participate by posting on a regular basis. The rest for whatever reason choose to read messages only. We just have no way of knowing. I do know that the requests I receive to join this group come mostly from women. But I think in general women are much more likely to reach out for help and friendship than men are. Whether we have members who actually live in the confines of New York City or not I don't know. We really are a very random sample, not an evenly distributed representation of people who cope with pulmonary fibrosis. Beth in North Carolina Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 "Take chances, make mistakes and get messy!" Miss Frizzle To: Breathe-Support Sent: Sunday, November 30, 2008 1:30:40 PMSubject: Re: PF demographics Question BarbaraThe question is does it disproportionately impact New York womentransplanted to NC or is it just that New York women with it move southand then go to online forums. lolI'll toss another oddity out there. I mentioned South Florida earlier.Do we have any members here who actually live in New York City or in LosAngeles, itself. Texas and Pennsylvania sure seem to have their share. To everyone...It seems based on theon-line participants of Breathe-support that PF:> 1. may effect more women than men> 2. may effect more people from European ancestry> Or..is it that ladies just like to talk more? and those ladies happento be sort of "blond"> I find it interesting that we have very few men who post...hey you maybe lurking..but we don't know you.> Also, so many of us in pictures have the same coloring be it "natural" or not.> Just wondering ...it's probably a "blond" sort of question too! I'mone of them after-all.> --> Z 64, fibriotic NSIP/o5/PA And "mild" PH/10/07 andReynaud's too!! No, NSIP was not self-inflicted… I never smoked!> Potter, reader,carousel lover and MomMom to Darah and Sara"I'm gonna be iron like a lion in Zion" Bob Marley> Vinca Minor-periwinkle is my flower> <!--[if !supportEmptyParas] --> <!--[endif]- ->> <!--[if !supportEmptyParas] --> <!--[endif]- ->>>>>>>>> Barbara McD> IPF, Sept 08> Beautiful Western NC>>>> Let us not become weary in doing good, for at the proper time we willreap a harvest if we do not give up. Galatians 6:9> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 30, 2008 Report Share Posted November 30, 2008 Hmmmm…. If the plural for mouse is mice, why isn’t the plural for spouse, spice??? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 30, 2008 Report Share Posted November 30, 2008 MB Oh, don't confuse my timeline with facts....lol Yes, we have so little information here or elsewhere but I think its safe to say this group of diseases is fully capable of attacking anyone, anywhere, at any time. The forum is random but it also reflects a population that is open to support and sharing, looking for help, internet oriented. It's sad to me that so few men do find this group, but I do think its increased significantly in the last year. There is a similarity to counseling, therapists and psychologists. Excepting addictions, their patients are far more female than male. Doesn't mean females have greater need (although some would say the men are just carriers of mental illness) but men are less likely to seek help. I have many female friends who have sought counseling and tried to get their spouses to go with them, even if just once or twice, and not been able to. I think many men still live in that world that doesn't allow them to admit to weakness or needing support. Well, I know I need it. It's such a great feeling to know that regardless anytime I want I can come right here and talk to friends who understand. To everyone...It seems based on the > on-line participants of Breathe-support that PF: > > 1. may effect more women than men > > 2. may effect more people from European ancestry > > Or..is it that ladies just like to talk more? and those ladies happen > to be sort of " blond " > > I find it interesting that we have very few men who post...hey you may > be lurking..but we don't know you. > > Also, so many of us in pictures have the same coloring be it " natural > " or not. > > Just wondering ...it's probably a " blond " sort of question too! I'm > one of them after-all. > > -- > > Z 64, fibriotic NSIP/o5/PA And " mild " PH/10/07 and > Reynaud's too!! No, NSIP was not self-inflicted I never smoked! > > Potter, reader,carousel lover and MomMom to Darah and Sara > " I'm gonna be iron like a lion in Zion " Bob Marley > > Vinca Minor-periwinkle is my flower > > <!--[if !supportEmptyParas] --> <!--[endif]- -> > > <!--[if !supportEmptyParas] --> <!--[endif]- -> > > > > > > > > > > > > > > > > Barbara McD > > IPF, Sept 08 > > Beautiful Western NC > > > > > > > > Let us not become weary in doing good, for at the proper time we will > reap a harvest if we do not give up. Galatians 6:9 > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 30, 2008 Report Share Posted November 30, 2008 Perhaps it is. Are you saying two spouses would be spicy? I guess either would be exciting or suicidal. Speaking of total random thoughts....lol > > Hmmmm.. If the plural for mouse is mice, why isn't the plural for spouse, > spice??? > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 30, 2008 Report Share Posted November 30, 2008 Hey Barbara... here's the 'blonde' question! lol MamaSher, age 70. IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there! Re: PF demographics Question Hmmmm…. If the plural for mouse is mice, why isn’t the plural for spouse, spice??? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 30, 2008 Report Share Posted November 30, 2008 Interesting discussion... For what it's worth...is it possible that the demographics of our " online " community reflect the fact that because there are so few of us with PF, it is more likely that those of us from more rural areas would need to turn to " online " support groups, whereas those in more urban areas would find the necessary numbers to be able to have a succesful " in-person " support group? I personally, have to travel 120 miles to participate in an " in-person " group. I am able to do so because it is the area that I used to live in, and I have friends and family there, and also because the group meets only once a month. The group is sponsored by the Lung Transplant Program at Brigham and Women's Hospital in Boston. I am generally able to schedule my appointments there on the same day as group, which is a big help. By the way, the group is more than 50% male patients. Steve aka...Knip Dx 9/07 confirmed via VATS 12/07 56 New Hampshire To everyone...It seems based on the > on-line participants of Breathe-support that PF: > > 1. may effect more women than men > > 2. may effect more people from European ancestry > > Or..is it that ladies just like to talk more? and those ladies happen > to be sort of " blond " > > I find it interesting that we have very few men who post...hey you may > be lurking..but we don't know you. > > Also, so many of us in pictures have the same coloring be it " natural > " or not. > > Just wondering ...it's probably a " blond " sort of question too! I'm > one of them after-all. > > -- > > Z 64, fibriotic NSIP/o5/PA And " mild " PH/10/07 and > Reynaud's too!! No, NSIP was not self-inflicted I never smoked! > > Potter, reader,carousel lover and MomMom to Darah and Sara > " I'm gonna be iron like a lion in Zion " Bob Marley > > Vinca Minor-periwinkle is my flower > > <!--[if !supportEmptyParas]--> <!--[endif]--> > > <!--[if !supportEmptyParas]--> <!--[endif]--> > > > > > > > > > > > > > > > > Barbara McD > > IPF, Sept 08 > > Beautiful Western NC > > > > > > > > Let us not become weary in doing good, for at the proper time we will > reap a harvest if we do not give up. Galatians 6:9 > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 30, 2008 Report Share Posted November 30, 2008 <snip> I am so proud of the men on our board who realize that life is much more than what you look like and that true strength is fighting to live.</snip>Thank you for this, . For those of us in recovery there's an *awful* thing we call a pity party.I was trying to have one today about PF and oxygen. My good wife,being the good wife and counselor she is, wouldn't let me go there. (poor me, poor me, pour me another drink...) So I called my sponsor, who reminded me that:A) this, too, shall pass, lessons not learned are retaughtand, most importantly:C) pride goeth before a fall Then I check my email. Lordy, , I *so* needed to read that.Thank you. I have to keep reminding myself that PF sucks, but Idon't.jon -- Two wrongs don't make a right, but two 's make an airplane. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 30, 2008 Report Share Posted November 30, 2008 Bruce...there is a support group that meets at the hospital about 12 miles away. I've been a few times but they are so sour and unfriendly that I don't like going. I tried to "do my part" but I'd rather be here with those I cannot see than those I can see and can't communicate with. MamaSher, age 70. IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there! Re: PF demographics Question Interesting discussion... For what it's worth...is it possible that the demographics of our "online" community reflect the fact that because there are so few of us with PF, it is more likely that those of us from more rural areas would need to turn to "online" support groups, whereas those in more urban areas would find the necessary numbers to be able to have a succesful "in-person" support group? I personally, have to travel 120 miles to participate in an "in-person" group. I am able to do so because it is the area that I used to live in, and I have friends and family there, and also because the group meets only once a month. The group is sponsored by the Lung Transplant Program at Brigham and Women's Hospital in Boston. I am generally able to schedule my appointments there on the same day as group, which is a big help. By the way, the group is more than 50% male patients.Steve aka...Knip Dx 9/07 confirmed via VATS 12/0756 New Hampshire To everyone...It seems based on the> on-line participants of Breathe-support that PF:> > 1. may effect more women than men> > 2. may effect more people from European ancestry> > Or..is it that ladies just like to talk more? and those ladies happen> to be sort of "blond"> > I find it interesting that we have very few men who post...hey you may> be lurking..but we don't know you.> > Also, so many of us in pictures have the same coloring be it "natural> " or not.> > Just wondering ...it's probably a "blond" sort of question too! I'm> one of them after-all.> > --> > Z 64, fibriotic NSIP/o5/PA And "mild" PH/10/07 and> Reynaud's too!! No, NSIP was not self-inflicted…I never smoked!> > Potter, reader,carousel lover and MomMom to Darah and Sara> "I'm gonna be iron like a lion in Zion" Bob Marley> > Vinca Minor-periwinkle is my flower> > <!--[if !supportEmptyParas]--> <!--[endif]-->> > <!--[if !supportEmptyParas]--> <!--[endif]-->> >> >> >> >> >> >> >> > Barbara McD> > IPF, Sept 08> > Beautiful Western NC> >> >> >> > Let us not become weary in doing good, for at the proper time we will> reap a harvest if we do not give up. Galatians 6:9> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 30, 2008 Report Share Posted November 30, 2008 Hey Jon ... the tough one here is that "everything is just the way it's supposed to be"... it sure takes a 12step background to work through that one. I may have missed a post of yours somewhere...do you have any idea 'how' you got PF? And how long ago? MamaSher, age 70. IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there! Re: PF demographics Question On Sun, Nov 30, 2008 at 11:53, denise randel <dnsrndl (AT) yahoo (DOT) com> wrote: <snip> I am so proud of the men on our board who realize that life is much more than what you look like and that true strength is fighting to live. </snip>Thank you for this, .For those of us in recovery there's an *awful* thing we call a pity party.I was trying to have one today about PF and oxygen. My good wife,being the good wife and counselor she is, wouldn't let me go there.(poor me, poor me, pour me another drink...) So I called my sponsor, who reminded me that:A) this, too, shall pass, lessons not learned are retaughtand, most importantly:C) pride goeth before a fallThen I check my email. Lordy, , I *so* needed to read that.Thank you. I have to keep reminding myself that PF sucks, but Idon't.jon -- Two wrongs don't make a right,but two 's make an airplane. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 30, 2008 Report Share Posted November 30, 2008 Beth I have found that some of the men on the board rarely write and some of the women who write have spouses or significant others with the disease I also think that a lot of people who use this board might not be able to travel to an in-person support group (opinion-- fact or reality, i don't know) i am not aware of a local support group unless I want to go into the city I do know that there are a few people in the Bucks County area with PF, but nothing is organized that I am aware of the better breather's support group at the local hospital, includes all lung diseases (COPD, etc)Pink Joyce IPF 3/06 Pennsylvania Subject: Re: Re: PF demographics QuestionTo: Breathe-Support Date: Sunday, November 30, 2008, 2:40 PM See Bruce the trouble with that is your timeline is off....I went online and found this group 18 months before I moved south so back to your drawing board to rethink your hypothesis. In all seriousness though the demographic information we can glean from participation on this board is very limited. We have over 600 members currently. We don't know a thing about most of them. Only a couple of dozen participate by posting on a regular basis. The rest for whatever reason choose to read messages only. We just have no way of knowing. I do know that the requests I receive to join this group come mostly from women. But I think in general women are much more likely to reach out for help and friendship than men are. Whether we have members who actually live in the confines of New York City or not I don't know. We really are a very random sample, not an evenly distributed representation of people who cope with pulmonary fibrosis. Beth in North Carolina Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 "Take chances, make mistakes and get messy!" Miss Frizzle From: Bruce Moreland <brucemoreland@ gmail.com>To: Breathe-Support@ yahoogroups. comSent: Sunday, November 30, 2008 1:30:40 PMSubject: Re: PF demographics Question BarbaraThe question is does it disproportionately impact New York womentransplanted to NC or is it just that New York women with it move southand then go to online forums. lolI'll toss another oddity out there. I mentioned South Florida earlier.Do we have any members here who actually live in New York City or in LosAngeles, itself. Texas and Pennsylvania sure seem to have their share. To everyone...It seems based on theon-line participants of Breathe-support that PF:> 1. may effect more women than men> 2. may effect more people from European ancestry> Or..is it that ladies just like to talk more? and those ladies happento be sort of "blond"> I find it interesting that we have very few men who post...hey you maybe lurking..but we don't know you.> Also, so many of us in pictures have the same coloring be it "natural" or not.> Just wondering ...it's probably a "blond" sort of question too! I'mone of them after-all.> --> Z 64, fibriotic NSIP/o5/PA And "mild" PH/10/07 andReynaud's too!! No, NSIP was not self-inflicted… I never smoked!> Potter, reader,carousel lover and MomMom to Darah and Sara"I'm gonna be iron like a lion in Zion" Bob Marley> Vinca Minor-periwinkle is my flower> <!--[if !supportEmptyParas] --> <!--[endif]- ->> <!--[if !supportEmptyParas] --> <!--[endif]- ->>>>>>>>> Barbara McD> IPF, Sept 08> Beautiful Western NC>>>> Let us not become weary in doing good, for at the proper time we willreap a harvest if we do not give up. Galatians 6:9> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 30, 2008 Report Share Posted November 30, 2008 population density could have something to do with demographics of on line support groupPink Joyce IPF 3/06 Pennsylvania Subject: Re: Re: PF demographics QuestionTo: Breathe-Support Date: Sunday, November 30, 2008, 1:29 PM Bruce ... I live in Oregon and I know of two other people who deal with our disease. There a scattered few (per our gathering last Father's Day) in WA. I've wondered about why going East there are more and more. Seems to be many of us in TX. MamaSher, age 70. IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there! Re: PF demographics Question Women and Bruce like to talk more. lolI've wondered the same thing. I've even wondered geographically. Forinstance, to my knowledge, we do not have a single member from SouthFlorida (Miami/Fort Lauderdale/West Palm).I have not found any concrete information, so will hypothesize a bit. Ido not think it affects women more than men of the same age. Now, thereare more older women than men due to lifespan being greater. So when youlook at 60 or 65 and above you'll find more women. Also, I think men maybe diagnosed slower because they start with greater lung capacity andthey are more hesitant to see doctors in many cases. However, I did lookat several transplant centers and the number of persons getting listedwhich of course includes all lung diseases and it was very near men vs.women the same as the general population. I think on the whole men maydeal poorer with the disease and if you go to the caregiver board you'llthink far more men have it than women because there will be so many morewomen caregivers. Men are far more hesitant then to look for support inmy opinion and to want to share feelings on such a subject. So, myopinion is that it does not vary greatly by sex.As to European ancestry, race, origin and any of those issues, I thinkit would be extremely hard to tell. We do know that in the US, on thewhole, African Americans and Hispanics do not get equal medical care.They don't go to doctors as much and probably not in many cases the samequality of doctor. But the same is true of economically disadvantagedwhites. Each of us had to find a way to a pulmonologist, through testingand to diagnosis. Many of us still went a long time before diagnosis. Ithink its highly likely that any statistics or indications towardEuropean ancestry are more a matter of diagnosis and medical care thanrelated to the disease itself, although I have no way of proving that. Idid look at those waitlisted at various locations for organ transplants.UCLA was 22% hispanic. UAB was 17% African American. UCSF was 9% AfricanAmerican, 15% Hispanic, 6% Asian. 20% of the transplants at UTSA werehispanics.Now, I'll toss out another one. Is it different based on the country orpart of a country we live in. I highly suspect this to be so because ofthe exposures we have. But it would be equally difficult to prove.I think the building of some database information at the national levelmay help provide some indications on these issues, but it will stillonly reflect those who got diagnosed.So, my opinion is that it is not more female than male nor is it moreEuropean ancestry. But, I do think it was a very interesting question.You would definitely get an impression it was female from this forum.From visiting my pulmonologist or rheumatologist office you wouldconclude it was only European ancestry. Unfortunately too it does showwhat a small percentage of people ever find their way to this supportgroup online. There are lots out there struggling to deal with it withno help. Disproportionately I imagine more men doing so and in turnthats putting more burden on female spouses.>> To everyone...It seems based on the on-line participants of> Breathe-support that PF:> 1. may effect more women than men> 2. may effect more people from European ancestry> Or..is it that ladies just like to talk more? and those ladies happento> be sort of "blond"> I find it interesting that we have very few men who post...hey you may> be lurking..but we don't know you.> Also, so many of us in pictures have the same coloring be it "natural"> or not.> Just wondering ...it's probably a "blond" sort of question too! I'mone> of them after-all.> -->>> Z 64, fibriotic NSIP/o5/PA>>> And "mild" PH/10/07 and Reynaud's too!!>> No, NSIP was not self-inflicted. ..I never smoked!>>> Potter, reader,carousel lover and MomMom to Darah>>> and Sara>> *"I'm gonna be iron like a lion in Zion" Bob Marley*>> *Vinca Minor-periwinkle is my flower*>> * *>> * *> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 30, 2008 Report Share Posted November 30, 2008 what does UCSD stand for? University of California S? D? That's interesting what you wrote about the men not wanting to wear the oxygen in public a lady in this area who had a transplant, refused to go out with oxygen if she went shopping, it had to be at a store with a cart that she could use for support while whe walked Pink Joyce IPF 3/06 Pennsylvania From: Zion <ljz741 (AT) verizon (DOT) net>Subject: PF demographics QuestionTo: Breathe-Support@ yahoogroups. comDate: Sunday, November 30, 2008, 9:16 AM To everyone...It seems based on the on-line participants of Breathe-support that PF:1. may effect more women than men2. may effect more people from European ancestryOr..is it that ladies just like to talk more? and those ladies happen to be sort of "blond"I find it interesting that we have very few men who post...hey you may be lurking..but we don't know you.Also, so many of us in pictures have the same coloring be it "natural " or not.Just wondering ...it's probably a "blond" sort of question too! I'm one of them after-all. -- Z 64, fibriotic NSIP/o5/PA And “mild” PH/10/07 and Reynaud’s too!! No, NSIP was not self-inflicted… I never smoked! Potter, reader,carousel lover and MomMom to Darah and Sara “I’m gonna be iron like a lion in Zion” Bob Marley Vinca Minor-periwinkle is my flower Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 30, 2008 Report Share Posted November 30, 2008 --We have Geeta on line and we don't know what the PF stats in India are like however your points are well made my natural color was dark brownPink Joyce IPF 3/06 Pennsylvania Subject: PF demographics QuestionTo: Breathe-Support Date: Sunday, November 30, 2008, 12:16 PM To everyone...It seems based on the on-line participants of Breathe-support that PF:1. may effect more women than men2. may effect more people from European ancestryOr..is it that ladies just like to talk more? and those ladies happen to be sort of "blond"I find it interesting that we have very few men who post...hey you may be lurking..but we don't know you.Also, so many of us in pictures have the same coloring be it "natural " or not.Just wondering ...it's probably a "blond" sort of question too! I'm one of them after-all. -- Z 64, fibriotic NSIP/o5/PA And “mild” PH/10/07 and Reynaud’s too!! No, NSIP was not self-inflicted…I never smoked! Potter, reader,carousel lover and MomMom to Darah and Sara “I’m gonna be iron like a lion in Zion” Bob Marley Vinca Minor-periwinkle is my flower Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 30, 2008 Report Share Posted November 30, 2008 Steve, I live in the Philadelphia suburbs..there is no specific PF Support group really nearby. There is a pulmonary rehab related one in the city at Temple University Lung Center. I go to the University of Pennsylvania for my doctors and they have no support group there at all. I also think that on-line groups have a form of safety net...you can participate or lurk..read and/or post. You don't have to be face-to-face if that's not comfortable. We have had face-to-face lunches and I really like those for my wellness. .. Z fibriotic NSIP/05 Z 64, fibriotic NSIP/o5/PA And “mild” PH/10/07 and Reynaud’s too!! No, NSIP was not self-inflicted…I never smoked! Potter, reader,carousel lover and MomMom to Darah and Sara “I’m gonna be iron like a lion in Zion” Bob Marley Vinca Minor-periwinkle is my flower czd002 wrote: Interesting discussion... For what it's worth...is it possible that the demographics of our "online" community reflect the fact that because there are so few of us with PF, it is more likely that those of us from more rural areas would need to turn to "online" support groups, whereas those in more urban areas would find the necessary numbers to be able to have a succesful "in-person" support group? I personally, have to travel 120 miles to participate in an "in-person" group. I am able to do so because it is the area that I used to live in, and I have friends and family there, and also because the group meets only once a month. The group is sponsored by the Lung Transplant Program at Brigham and Women's Hospital in Boston. I am generally able to schedule my appointments there on the same day as group, which is a big help. By the way, the group is more than 50% male patients. Steve aka...Knip Dx 9/07 confirmed via VATS 12/07 56 New Hampshire To everyone...It seems based on the > on-line participants of Breathe-support that PF: > > 1. may effect more women than men > > 2. may effect more people from European ancestry > > Or..is it that ladies just like to talk more? and those ladies happen > to be sort of "blond" > > I find it interesting that we have very few men who post...hey you may > be lurking..but we don't know you. > > Also, so many of us in pictures have the same coloring be it "natural > " or not. > > Just wondering ...it's probably a "blond" sort of question too! I'm > one of them after-all. > > -- > > Z 64, fibriotic NSIP/o5/PA And "mild" PH/10/07 and > Reynaud's too!! No, NSIP was not self-inflicted…I never smoked! > > Potter, reader,carousel lover and MomMom to Darah and Sara > "I'm gonna be iron like a lion in Zion" Bob Marley > > Vinca Minor-periwinkle is my flower > > <!--[if !supportEmptyParas]--> <!--[endif]--> > > <!--[if !supportEmptyParas]--> <!--[endif]--> > > > > > > > > > > > > > > > > Barbara McD > > IPF, Sept 08 > > Beautiful Western NC > > > > > > > > Let us not become weary in doing good, for at the proper time we will > reap a harvest if we do not give up. Galatians 6:9 > > > No virus found in this incoming message. Checked by AVG - http://www.avg.com Version: 8.0.176 / Virus Database: 270.9.11/1820 - Release Date: 11/29/2008 6:52 PM Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 30, 2008 Report Share Posted November 30, 2008 Bruce: Sounds like you've been a troublemaker from wayyyyyy back! LOL BBruce Moreland wrote: BarbaraOr when the mother next door to me at the lake would ask if I wantedCoke or Mountain Dew and I'd say "yes". Now Jane would then try again,but her daughter Mona would just fix me a drink of half Coke and halfMountain Dew. Actually not nearly as bad as it sounds. lol To everyone...It seems based on the> on-line participants of Breathe-support that PF:> > 1. may effect more women than men> > 2. may effect more people from European ancestry> > Or..is it that ladies just like to talk more? and those ladieshappen> to be sort of "blond"> > I find it interesting that we have very few men who post...hey youmay> be lurking..but we don't know you.> > Also, so many of us in pictures have the same coloring be it"natural> " or not.> > Just wondering ...it's probably a "blond" sort of question too! I'm> one of them after-all.> > --> > Z 64, fibriotic NSIP/o5/PA And "mild" PH/10/07 and> Reynaud's too!! No, NSIP was not self-inflicted…I never smoked!> > Potter, reader,carousel lover and MomMom to Darah and Sara> "I'm gonna be iron like a lion in Zion" Bob Marley> > Vinca Minor-periwinkle is my flower> > <!--[if !supportEmptyParas]--> <!--[endif]-->> > <!--[if !supportEmptyParas]--> <!--[endif]-->> >> >> >> >> >> >> >> > Barbara McD> > IPF, Sept 08> > Beautiful Western NC> >> >> >> > Let us not become weary in doing good, for at the proper time wewill> reap a harvest if we do not give up. Galatians 6:9> >>>>>>>> Barbara McD> IPF, Sept 08> Beautiful Western NC>>>> Let us not become weary in doing good, for at the proper time we willreap a harvest if we do not give up. Galatians 6:9>Barbara McDIPF, Sept 08Beautiful Western NC Let us not become weary in doing good, for at the proper time we will reap a harvest if we do not give up. Galatians 6:9 Quote Link to comment Share on other sites More sharing options...
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