Re: News Article

December 4, 2008

I thought something was wrong for at least eight years before I was diagnosed, but I never heard anything from the doctor(s) until this past September. Joyce T Rosenberg wrote: i think there are a lot of people with ILD and don't know it i think i had it a long time before diagnosis SOB walking up hills--thought it was out of shape and/or heart

diseasePink Joyce IPF 3/06 Pennsylvania From: friend.patti <friend.patti (AT) yahoo (DOT) com>Subject: Re: News ArticleTo: Breathe-Support Date: Thursday, December 4, 2008, 3:44 AM MBAre the numbers so low (in comparison with breast cancer) with PF because we are not being diagnosed at the first sign.. I know in my case the xray showed PF in '99 and my doc just said oh, and that was it. Still have the xray result showing that. Nothing was done until i

got tired of being short of breath and wanted to keep being active with the grandbabies and kids.That was in 7'06. I'm curious. How many people are out there not knowing.. patti, ipf 7'06, nj> > > > > >> > > > > > Men's Lacrosse: Colby helps raise more than $10k towards > > > > Pulmonary> > > > > > Fibrosis Research> > > > > > > > > > > > November 28, 2008> > > > > > from press releases> > > > > > > > > > > > WATERVILLE, Maine --- The Colby College men's lacrosse team > > and > > > > the> > > > > > Waterville Police

Department recently joined forces to > raise > > > > more > > > > > than> > > > > > $10,000 in the first annual Bench Press for Pulmonary > > Fibrosis.> > > > > > > > > > > > Each member of the Colby men's lacrosse team collected > > pledges > > > > that> > > > > > were for per repetition of 135 pounds on the bench press. > > The > > > > team > > > > > set> > > > > > up the bench outside Pulver Pavilion on the Colby campus. > > The > > > > team> > > > > > sold bracelets, passed out flyers, and educated the student > > > body > > > > on> > > > > > Pulmonary Fibrosis. Members of the team then benched 135 > > pounds >

> > > as> > > > > > many times as possible to raise money.> > > > > > > > > > > > Junior Max Weiss was a leader in organizing the event and > > > helped > > > > > man> > > > > > the bench press for the entire 12-hour event.> > > > > > > > > > > > "It's clear that this event meant a great deal to the Colby > > > > > lacrosse> > > > > > family and in particular to Max. He was there for the > entire > > day> > > > > > supporting his teammates while collecting the most pledges > > and > > > > the> > > > > > second most amount of money," Colby men's lacrosse coach > Jon > > > > > > > > > > > said. "Max has proven

that he has a passion for being > > civically> > > > > > engaged on campus and I couldn't be more proud of him."> > > > > > > > > > > > also was happy to partner with the Waterville > Police> > > > > > Department and police chief Joe Massey on the venture.> > > > > > > > > > > > "I cannot thank Chief Massey enough. Not only did he help > > raise > > > > > money> > > > > > and awareness for the Pulmonary Fibrosis Foundation, but he > > > > lifted > > > > > the> > > > > > weights right alongside our men," said. "His > > > > involvement > > > > > in> > > > > > the event was a wonderful gesture on the part of the > > Waterville

> > > > > Police> > > > > > Department."> > > > > > > > > > > > Pulmonary Fibrosis is a devastating disease that involves > > > > scarring > > > > > of> > > > > > the lung tissue. Often misdiagnosed, people with Pulmonary > > > > Fibrosis> > > > > > experience extreme discomfort as the air sacs of the lungs > > > > > gradually> > > > > > become replaced by fibrotic tissue. When the scar forms, > the > > > > tissue> > > > > > becomes thicker causing an irreversible loss of the > tissue's > > > > > ability> > > > > > to transfer oxygen into the bloodstream.> > > > > > > > > > > > Close to 40,000 people die every

year from Pulmonary > > Fibrosis > > > in > > > > > the> > > > > > United States. More than 200,000 people in the U.S. have > been> > > > > > diagnosed with the disease and an additional 50,000 are > > likely > > > > to > > > > > be> > > > > > diagnosed in 2009.> > > > > >> > > > >> > > >> > >> >>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

December 4, 2008

Jeane, I saw "Hershey" in your

post...where in PA are you?

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

jeane7160 wrote:

Mine was finally diagnosed in 2005 but like I said I have reports

from 2001 and 2002 showing that the radiologist informed the doctors

that there were interstitial changes and scarring on both lungs and

asking that more tests be done to find out what was going on. Both

were ignored. In 2003 I had PFT's that were read as my having

interstitial problems and the doctor who read them actually ignored

that as well. It was not until I again changed doctors and my new

one saw all of this stuff and sent me to another pulmo that anything

was done to see what was going on. Even then it was just well you

have interstitial lung disease and there is nothing that can be done

for it. From there on my complaints of symptoms were met with "well

that is the ILD". It was not till Hershey that this was met with

real concern. My bet is that there are many more out there that are

treated like this.

For so many people it is treated like something trivial like a hang

nail that is going to be there forever. This being the case, the

question is how many people die from pneumonia and other

complications never knowing their diseased lungs were as bad. For

those the death certificate does not reflect that they died from the

lung disease they had that caused the complications that killed

them. Since they died under a doctor's care there would be no need

for autopsies that would reveal the true number of people who are

victims of this.

If there were autopsies done on people who died from pulmonary

illnesses of any kind I am positive that the true numbers would be a

lot higher and the gravity of this truely come to light in a big

way. Victim's relatives would be screaming to get research going and

people would not allow their doctors to drop the ball out of fear

that it is going to get them and might not have to.

Jean

> > > > > > >

> > > > > > > Men's Lacrosse: Colby helps raise

more than $10k

towards

> > > > > Pulmonary

> > > > > > > Fibrosis Research

> > > > > > >

> > > > > > > November 28, 2008

> > > > > > > from press releases

> > > > > > >

> > > > > > > WATERVILLE, Maine --- The Colby

College men's lacrosse

> team

> > > and

> > > > > the

> > > > > > > Waterville Police Department

recently joined forces to

> > raise

> > > > > more

> > > > > > than

> > > > > > > $10,000 in the first annual Bench

Press for Pulmonary

> > > Fibrosis.

> > > > > > >

> > > > > > > Each member of the Colby men's

lacrosse team collected

> > > pledges

> > > > > that

> > > > > > > were for per repetition of 135

pounds on the bench

> press.

> > > The

> > > > > team

> > > > > > set

> > > > > > > up the bench outside Pulver Pavilion

on the Colby

> campus.

> > > The

> > > > > team

> > > > > > > sold bracelets, passed out flyers,

and educated the

> student

> > > > body

> > > > > on

> > > > > > > Pulmonary Fibrosis. Members of the

team then benched

135

> > > pounds

> > > > > as

> > > > > > > many times as possible to raise

money.

> > > > > > >

> > > > > > > Junior Max Weiss was a leader in

organizing the event

> and

> > > > helped

> > > > > > man

> > > > > > > the bench press for the entire

12-hour event.

> > > > > > >

> > > > > > > "It's clear that this event meant a

great deal to the

> Colby

> > > > > > lacrosse

> > > > > > > family and in particular to Max. He

was there for the

> > entire

> > > day

> > > > > > > supporting his teammates while

collecting the most

> pledges

> > > and

> > > > > the

> > > > > > > second most amount of money," Colby

men's lacrosse

coach

> > Jon

> > > > > >

> > > > > > > said. "Max has proven that he has a

passion for being

> > > civically

> > > > > > > engaged on campus and I couldn't be

more proud of him."

> > > > > > >

> > > > > > > also was happy to partner

with the Waterville

> > Police

> > > > > > > Department and police chief Joe

Massey on the venture.

> > > > > > >

> > > > > > > "I cannot thank Chief Massey enough.

Not only did he

> help

> > > raise

> > > > > > money

> > > > > > > and awareness for the Pulmonary

Fibrosis Foundation,

but

> he

> > > > > lifted

> > > > > > the

> > > > > > > weights right alongside our men,"

said. "His

> > > > > involvement

> > > > > > in

> > > > > > > the event was a wonderful gesture on

the part of the

> > > Waterville

> > > > > > Police

> > > > > > > Department."

> > > > > > >

> > > > > > > Pulmonary Fibrosis is a devastating

disease that

> involves

> > > > > scarring

> > > > > > of

> > > > > > > the lung tissue. Often misdiagnosed,

people with

> Pulmonary

> > > > > Fibrosis

> > > > > > > experience extreme discomfort as the

air sacs of the

> lungs

> > > > > > gradually

> > > > > > > become replaced by fibrotic tissue.

When the scar

forms,

> > the

> > > > > tissue

> > > > > > > becomes thicker causing an

irreversible loss of the

> > tissue's

> > > > > > ability

> > > > > > > to transfer oxygen into the

bloodstream.

> > > > > > >

> > > > > > > Close to 40,000 people die every

year from Pulmonary

> > > Fibrosis

> > > > in

> > > > > > the

> > > > > > > United States. More than 200,000

people in the U.S.

have

> > been

> > > > > > > diagnosed with the disease and an

additional 50,000 are

> > > likely

> > > > > to

> > > > > > be

> > > > > > > diagnosed in 2009.

> > > > > > >

> > > > > >

> > > > >

> > > >

> > >

> >

>

No virus found in this incoming message.

Checked by AVG - http://www.avg.com Version: 8.0.176 / Virus Database: 270.9.13/1828 - Release Date: 12/4/2008 8:05 AM

December 4, 2008

Bruce: What do you know about plug-in room deodorizers? My husband loves all kinds of room deodorizers--now I'm thinking maybe that's a bad idea? (On top of his smoking - in rooms I am not in at that moment....) BBruce Moreland wrote: MBI'm convinced its both up in frequency and being detected morefrequently. We see the cases of doctors today who don't detect it andyet know they are more aware today than previously.

As to up infrequency, our environment is just contaminated with more toxins of allsorts and we don't know which of those may be contributing to increasesin this and other diseases. We learn to avoid one thing but there areten more added to the air.A simple example. My ex mother in law has COPD and one thing thatprobably contributed heavily was owning an apartment prep business andcleaning lots of ovens with strong oven cleaners. However, more recentlyshe used moth balls heavily. They are very toxic. While we don't use theoven cleaners, look at all the items today that have fragrances thatonce didn't. How many of those affect us? One I know specifically thateffects many is these plug in room deodorizers. They may bother whenactive but when they are empty or no longer working they become moretoxic to those impacted.In many cases we've made work environments safer, but then we've turnedaround and made our

living environment less so. Look at the number ofbad air days we had here this summer and well into fall. I even read anarticle in the past couple of days on something as simple as ragweed. Wearen't imagining the bad allergy season from ragweed as being longer.The ragweed is growing better and lasting longer. This articleattributes that to global warming and shows the science of how thesubtle change helps ragweed thrive. Is it correct? Who knows. Not to beparanoid but look at all the electronics today. We do know CRT's containcontaminents in small quantities and assumed contained. Cell phones. Thereality is until we have more answers, we just don't know.> > > > > > >> > > > > > > Men's Lacrosse: Colby helps raise more than $10k towards> > > > > Pulmonary> > > > > > > Fibrosis Research> > > > > > >> > > > > > > November 28, 2008> > > > > > > from press releases> > > > > > >> > > > > > > WATERVILLE, Maine --- The Colby College men's lacrosse> team> > >

and> > > > > the> > > > > > > Waterville Police Department recently joined forces to> > raise> > > > > more> > > > > > than> > > > > > > $10,000 in the first annual Bench Press for Pulmonary> > > Fibrosis.> > > > > > >> > > > > > > Each member of the Colby men's lacrosse team collected> > > pledges> > > > > that> > > > > > > were for per repetition of 135 pounds on the bench> press.> > > The> > > > > team> > > > > > set> > > > > > > up the bench outside Pulver Pavilion on the Colby> campus.> > > The> > > > > team> > > > > > > sold bracelets, passed out flyers, and educated the>

student> > > > body> > > > > on> > > > > > > Pulmonary Fibrosis. Members of the team then benched 135> > > pounds> > > > > as> > > > > > > many times as possible to raise money.> > > > > > >> > > > > > > Junior Max Weiss was a leader in organizing the event> and> > > > helped> > > > > > man> > > > > > > the bench press for the entire 12-hour event.> > > > > > >> > > > > > > "It's clear that this event meant a great deal to the> Colby> > > > > > lacrosse> > > > > > > family and in particular to Max. He was there for the> > entire> > > day> > > > > > > supporting his teammates while collecting

the most> pledges> > > and> > > > > the> > > > > > > second most amount of money," Colby men's lacrosse coach> > Jon> > > > > > > > > > > > > said. "Max has proven that he has a passion for being> > > civically> > > > > > > engaged on campus and I couldn't be more proud of him."> > > > > > >> > > > > > > also was happy to partner with the Waterville> > Police> > > > > > > Department and police chief Joe Massey on the venture.> > > > > > >> > > > > > > "I cannot thank Chief Massey enough. Not only did he> help> > > raise> > > > > > money> > > > > > > and awareness for the Pulmonary Fibrosis Foundation,

but> he> > > > > lifted> > > > > > the> > > > > > > weights right alongside our men," said. "His> > > > > involvement> > > > > > in> > > > > > > the event was a wonderful gesture on the part of the> > > Waterville> > > > > > Police> > > > > > > Department."> > > > > > >> > > > > > > Pulmonary Fibrosis is a devastating disease that> involves> > > > > scarring> > > > > > of> > > > > > > the lung tissue. Often misdiagnosed, people with> Pulmonary> > > > > Fibrosis> > > > > > > experience extreme discomfort as the air sacs of the> lungs> > > > > > gradually> >

> > > > > become replaced by fibrotic tissue. When the scar forms,> > the> > > > > tissue> > > > > > > becomes thicker causing an irreversible loss of the> > tissue's> > > > > > ability> > > > > > > to transfer oxygen into the bloodstream.> > > > > > >> > > > > > > Close to 40,000 people die every year from Pulmonary> > > Fibrosis> > > > in> > > > > > the> > > > > > > United States. More than 200,000 people in the U.S. have> > been> > > > > > > diagnosed with the disease and an additional 50,000 are> > > likely> > > > > to> > > > > > be> > > > > > > diagnosed in 2009.> > > > > > >>

> > > > >> > > > >> > > >> > >> >>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

December 4, 2008

Barbara

Well, you explained in your second part much of the first part. By smoking his sense of smell is diminished plus they help mask the smoke odor. As to room deodorizers, I know they affect me very adversely. My breathing worsens with just one near me. I cannot take going into a room with several. I know there are many others who share my problems. Here is an article:

warm and inviting, soothing. Unbeknownst to us, however, we are actually adding toxins to the air we breathe.

Air fresheners seem to work on the room and clean the air but actually they work on us! They basically interfere with our sniffers. The chemicals coat our nasal passages with a film that deadens the nerve endings. They mask the problem instead of taking care of it and fool us into thinking the room is fresh and clean.

The ingredients are troubling and may include things like formaldehyde, artificial fragrance, benzyl alcohol, camphor, ethanol, and naphthalene, among others. Aside from causing asthma and allergies, many of these chemicals are known carcinogens that lead to cancer and birth defects. Many attack the central nervous system which can lead to Alzheimer's, Parkinson's, Multiple Sclerosis, or SIDs in infants. Sound clean to you?

Air fresheners and room deodorizers actually create pollution. When used in a confined area, like our homes, places of work, or cars, they create an intense amount of toxins in a small area. Children are particularly susceptible to poor air quality which can lead to a host of diseases and premature death. The EPA ranks poor indoor air quality among the top five environmental health risks to the public. Pollution indoors is oftentimes worse (sometimes up to 500 times worse!) than the pollution outdoors! Sure, tobacco smoke indoors is a horrible contributor to that, but aside from that, indoor pollution is primarily the cause of all the things we use to clean our homes and make our homes smell good. In aerosol form the dangers are multiplied because of the micro-particles that are created of the chemicals.

Scented and Aromatherapy candles are no better at clearing the air. Traditional candles are made of paraffin wax, a by-product of the gasoline industry, a petrochemical. The fragrance is either artificial, once again a petro-chemical and many not suited for combustion, or a pure essential oil which, when burned, no longer offers the therapeutic effect and actually converts into unhealthy byproducts. Scented paraffin candles usually contain metal or lead core wicks creating unsafe lead concentrations when burned. 100% of the lead that is inhaled when the candle is burned ends up in the bloodstream which can be particularly damaging to children. What is not inhaled immediately attaches to furniture and walls to be inhaled or ingested later. The black soot created from burning traditional, and especially scented, candles is toxic. According to the American Lung Association - "scented, paraffin candles cause lead poisoning and using slow burning paraffin candles cause poor indoor air quality, and a serious health concern." Once again, instead of freshening the air, they work to mask the odor while adding poisons to the air we breathe in the comfort of our own homes.

Now, I know this sounds very harsh and judgemental, but I just think continuing to smoke in the house, whether or not you are in the room, is unacceptable and inconsiderate of your health. I guess I'll never understand the power of the addiction. I can even understand one choosing to continue to smoke knowing its damage to their own health. But, I can't understand smoking in a home with someone who has a serious lung disease already. I just don't get it....

My disease may well have come from second hand smoke as at 18 the doctor said my lungs looked like a 40 year old two pack a day smoker. But, even though my parents couldn't stop smoking in spite of knowing its damage to them, they did refrain from smoking in my room or car. I feel certain had they known the danger of second hand smoke they wouldn't have smoked in the house, but would have gone outside or even stopped, not for themselves, but for me. They didn't know and we lived in the tobacco capital.

Please if you're on this forum, don't let family and friends do things harmful to you. This includes smoking and being around you when they are sick. It also includes those who are unhealthy for you because of other reasons. Create for yourself the best environment for enjoying life you can and don't allow anyone to interfere with getting the most of whatever time you have.

Getting off soapbox now.

> > > > > > > >> > > > > > > > Men's Lacrosse: Colby helps raise more than $10k towards> > > > > > Pulmonary> > > > > > > > Fibrosis Research> > > > > > > >> > > > > > > > November 28, 2008> > > > > > > > from press releases> > > > > > > >> > > > > > > > WATERVILLE, Maine --- The Colby College men's lacrosse> > team> > > > and> > > > > > the> > > > > > > > Waterville Police Department recently joined forces to> > > raise> > > > > > more> > > > > > > than> > > > > > > > $10,000 in the first annual Bench Press for Pulmonary> > > > Fibrosis.> > > > > > > >> > > > > > > > Each member of the Colby men's lacrosse team collected> > > > pledges> > > > > > that> > > > > > > > were for per repetition of 135 pounds on the bench> > press.> > > > The> > > > > > team> > > > > > > set> > > > > > > > up the bench outside Pulver Pavilion on the Colby> > campus.> > > > The> > > > > > team> > > > > > > > sold bracelets, passed out flyers, and educated the> > student> > > > > body> > > > > > on> > > > > > > > Pulmonary Fibrosis. Members of the team then benched 135> > > > pounds> > > > > > as> > > > > > > > many times as possible to raise money.> > > > > > > >> > > > > > > > Junior Max Weiss was a leader in organizing the event> > and> > > > > helped> > > > > > > man> > > > > > > > the bench press for the entire 12-hour event.> > > > > > > >> > > > > > > > "It's clear that this event meant a great deal to the> > Colby> > > > > > > lacrosse> > > > > > > > family and in particular to Max. He was there for the> > > entire> > > > day> > > > > > > > supporting his teammates while collecting the most> > pledges> > > > and> > > > > > the> > > > > > > > second most amount of money," Colby men's lacrosse coach> > > Jon> > > > > > > > > > > > > > > said. "Max has proven that he has a passion for being> > > > civically> > > > > > > > engaged on campus and I couldn't be more proud of him."> > > > > > > >> > > > > > > > also was happy to partner with the Waterville> > > Police> > > > > > > > Department and police chief Joe Massey on the venture.> > > > > > > >> > > > > > > > "I cannot thank Chief Massey enough. Not only did he> > help> > > > raise> > > > > > > money> > > > > > > > and awareness for the Pulmonary Fibrosis Foundation, but> > he> > > > > > lifted> > > > > > > the> > > > > > > > weights right alongside our men," said. "His> > > > > > involvement> > > > > > > in> > > > > > > > the event was a wonderful gesture on the part of the> > > > Waterville> > > > > > > Police> > > > > > > > Department."> > > > > > > >> > > > > > > > Pulmonary Fibrosis is a devastating disease that> > involves> > > > > > scarring> > > > > > > of> > > > > > > > the lung tissue. Often misdiagnosed, people with> > Pulmonary> > > > > > Fibrosis> > > > > > > > experience extreme discomfort as the air sacs of the> > lungs> > > > > > > gradually> > > > > > > > become replaced by fibrotic tissue. When the scar forms,> > > the> > > > > > tissue> > > > > > > > becomes thicker causing an irreversible loss of the> > > tissue's> > > > > > > ability> > > > > > > > to transfer oxygen into the bloodstream.> > > > > > > >> > > > > > > > Close to 40,000 people die every year from Pulmonary> > > > Fibrosis> > > > > in> > > > > > > the> > > > > > > > United States. More than 200,000 people in the U.S. have> > > been> > > > > > > > diagnosed with the disease and an additional 50,000 are> > > > likely> > > > > > to> > > > > > > be> > > > > > > > diagnosed in 2009.> > > > > > > >> > > > > > >> > > > > >> > > > >> > > >> > >> >> > > > > > > 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>

December 4, 2008

Yeah, Bruce, get off the soap box so I can get on... lol

I'm with you about smoking in a home where one of us is fighting this dreadful disease. It just isn't acceptable!

Speak up people...say NO MORE SMOKING INSIDE.

I used to love candles, had them all over the place until I discovered flamless candles. They are absolutely wonderful. Battery operated and look just like a candle.

I do use a room plug in deod. in the bathroom but no where else.

MamaSher, age 70. IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there!