Guest guest Posted November 30, 2008 Report Share Posted November 30, 2008 Steve No, you can look on both PFF and CPF's sites and you'll see how few support groups there are. There are many Better Breathers support groups, the American Lung Association group, but most have no PF'ers, just COPD'ers. A couple of them do emphasize PF. Dallas Fort Worth has no PF group and last i knew we were fairly populated. 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 University of California San Diego > > From: Zion ljz741 (AT) verizon (DOT) net> > Subject: PF demographics Question > To: Breathe-Support@ yahoogroups. com > 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 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 Barbara Yes, and the trouble I just referenced was on Lake Hickory.....so very near you. I also intend to be a troublemaker to the very end. 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 > > > > > > > > > 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 Support Groups Between PFF and CPF there appear to be a total of 49 groups listed in the country. I know some of those listed are not currently active and suspect a couple may not be pure PF but thats the best information I can find. 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 Bruce, Remember all we know about our membership is what they choose to tell us. We have no idea if we have members in south Florida. It's just not possible to know where most of our 600+ members come from. 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 1:01:46 PMSubject: 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 MB Well, just been curious that no active member has mentioned South Florida....I'm sure just a random thing. I doubt there is any significance, although the air there sure is cleaner than it is here. Maybe I'll move back just to change the active member demographics....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* > > > > * * > > > > * * > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 30, 2008 Report Share Posted November 30, 2008 Bruce, Now there's an idea....I'd move to south Florida tomorrow if I could!! 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 9:01:03 PMSubject: Re: PF demographics Question MBWell, just been curious that no active member has mentioned SouthFlorida....I' m sure just a random thing. I doubt there is anysignificance, although the air there sure is cleaner than it is here.Maybe I'll move back just to change the active memberdemographics. ...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*> >> > * *> >> > * *> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 30, 2008 Report Share Posted November 30, 2008 MB I debated it among other places. I loved it there. However, I'd be away from , from my therapist, and all my doctors and starting that all over. Its also a little more expensive to live there than here. A huge reason for me not to consider it more seriously though was medical care. I experienced problems right before moving here. I couldn't get into an ENT anytime soon and had ear issues. I saw one here and was immediately scheduled for surgery. To have waited an extra three or four months could have been very bad. At the time I lived there, HMO's, both medicare and other, predominated there. In turn the doctors had been assigned more patients than they can handle. As a result getting in to see the doctor you need is very difficult. My insurance company told me if I couldn't wait to go to an ER. This is for an ear exam and I had no idea the critical nature without the exam. The quality of South Florida hospitals also did not rank high at that time. I just pictured an infection and delay in treatment resulting in pneumonia as way too real a possibility. There are times I'd like to be away from all doctors but then I think of those situations and want to be able to see a competent doctor quickly. > > > > > > 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 Bruce, Well of course I agree. I'm here in NC for many reasons not the least of which is my proximity to Duke. What I meant when I said, I'd move if I could was....if I hadn't gotten sick, if being close to a facility like Duke wasn't paramount to me.... etc. Back a few years ago when I was starting to see that my son would eventually be grown and gone Fort Lauderdale was on my list of places I'd like to live. No longer an option but still a place I plan to visit next year! 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 9:25:24 PMSubject: Re: PF demographics Question MBI debated it among other places. I loved it there. However, I'd be awayfrom , from my therapist, and all my doctors and starting that allover. Its also a little more expensive to live there than here.A huge reason for me not to consider it more seriously though wasmedical care. I experienced problems right before moving here. Icouldn't get into an ENT anytime soon and had ear issues. I saw one hereand was immediately scheduled for surgery. To have waited an extra threeor four months could have been very bad. At the time I lived there,HMO's, both medicare and other, predominated there. In turn the doctorshad been assigned more patients than they can handle. As a resultgetting in to see the doctor you need is very difficult. My insurancecompany told me if I couldn't wait to go to an ER. This is for an earexam and I had no idea the critical nature without the exam. The qualityof South Florida hospitals also did not rank high at that time. I justpictured an infection and delay in treatment resulting in pneumonia asway too real a possibility. There are times I'd like to be away from alldoctors but then I think of those situations and want to be able to seea competent doctor quickly.> > >> > > 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 MB Well, many will disagree but I found South Florida to be paradise. Beautiful weather year round. Never too hot and not too cold. Only maybe two days a year you can't enjoy. Yes, I didn't especially enjoy Hurricane , but hurricanes on the whole hit the NC coast more than they do South Florida. I don't expect ever to move but close to Duke would be in my top list because of the combination of the medical care and the fact I have family in the area. Now, instead of moving, I'm just making plans to spend a good bit of July and August somewhere other than here, such as NC. > > > > > > > > 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 Is there a way to create a poll that members could take without having to "expose" themselves? I've seen that done on the EFFORTS site, but that is on a listserve.Take comfort in knowing that you are all helping those who decide to continue to lurk as I did for nearly 3 months. H.Citrus Heights, CaliforniaLIP ->2006NHL->1999 Bruce, Remember all we know about our membership is what they choose to tell us. We have no idea if we have members in south Florida. It's just not possible to know where most of our 600+ members come from. 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 1:01:46 PMSubject: 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 Gee, what's wrong with exposing themselves? Oopss......sorry, my O2 must be turned up too high. jim Subject: Re: Re: PF demographics QuestionTo: Breathe-Support Date: Sunday, November 30, 2008, 5:43 PM Is there a way to create a poll that members could take without having to "expose" themselves? I've seen that done on the EFFORTS site, but that is on a listserve.Take comfort in knowing that you are all helping those who decide to continue to lurk as I did for nearly 3 months. H.Citrus Heights, CaliforniaLIP ->2006NHL->1999 Bruce, Remember all we know about our membership is what they choose to tell us. We have no idea if we have members in south Florida. It's just not possible to know where most of our 600+ members come from. 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 1:01:46 PMSubject: 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 December 1, 2008 Report Share Posted December 1, 2008 what is the EFFORTS site?Pink Joyce IPF 3/06 Pennsylvania Subject: Re: Re: PF demographics QuestionTo: Breathe-Support Date: Sunday, November 30, 2008, 9:43 PM Is there a way to create a poll that members could take without having to "expose" themselves? I've seen that done on the EFFORTS site, but that is on a listserve.Take comfort in knowing that you are all helping those who decide to continue to lurk as I did for nearly 3 months. H.Citrus Heights, CaliforniaLIP ->2006NHL->1999 Bruce, Remember all we know about our membership is what they choose to tell us. We have no idea if we have members in south Florida. It's just not possible to know where most of our 600+ members come from. 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 1:01:46 PMSubject: 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 December 1, 2008 Report Share Posted December 1, 2008 LInda Penn has a support group meeting once a month on mondays i think it is primarily for transplant patients but i have been told that it is very good i keep avoid going to it because it is downtown and a shlepp Monday Dec 8 is the holiday party for lung transplant people i went to it the first year I plan on going again this year it was very uplifting to see people who are happy with their transplants Patti--you might be interested in this the support group schedule might be listed on the Penn website i should really check it outPink Joyce IPF 3/06 Pennsylvania 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> >> 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 December 1, 2008 Report Share Posted December 1, 2008 University of California, San Diego From: Breathe-Support [mailto:Breathe-Support ] On Behalf Of Joyce T Rosenberg Sent: Sunday, November 30, 2008 5:44 PM To: Breathe-Support Subject: Re: PF demographics Question 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 Question To: Breathe-Support@ yahoogroups. com 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 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 December 1, 2008 Report Share Posted December 1, 2008 Pink Joyce, I knew about the transplant support group but since I'm not a candidate for the TX I 'd just as soon stay here than schlepp to Penn an extra time. Every couple of months is enough for me and Mike. That almost cold that I was so sure was gone came back as a Sinus infection over the week-end! I saw the Internist today. Augmentin and loads of fluids and stay in!!!! The goal is to keep the mess from getting to my lungs.Duh! So far so good! If I'm not better in about 5 days he'll probably switch me to Levaquin.. at least that's his thoughts now.He's rather not keep using it all the time because I'll get less benefit from it after a while. That's the plans for the next few days. At least it waited until after Thanksgiving!!! 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 Joyce T Rosenberg wrote: LInda Penn has a support group meeting once a month on mondays i think it is primarily for transplant patients but i have been told that it is very good i keep avoid going to it because it is downtown and a shlepp Monday Dec 8 is the holiday party for lung transplant people i went to it the first year I plan on going again this year it was very uplifting to see people who are happy with their transplants Patti--you might be interested in this the support group schedule might be listed on the Penn website i should really check it out Pink Joyce IPF 3/06 Pennsylvania 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 No virus found in this incoming message. Checked by AVG - http://www.avg.com Version: 8.0.176 / Virus Database: 270.9.12/1822 - Release Date: 12/1/2008 8:23 AM Quote Link to comment Share on other sites More sharing options...
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