Re: NSIP & IPF Slight Restatement

[Guest guest]

I used the term Pulmonary Fibrosis interchangeably with ILD. When it is

used to simply represent the scarring varieties then you're correct you

don't have fibrosis, you have inflammation. Technically the Pulmonary

Fibrosis Foundation handout would not call NSIP a form of Pulmonary

Fibrosis. It also uses IPF to represent UIP. So, we're all better off if

we just think of ILD's and defining within them. You have an ILD known

as NSIP. I have an ILD known as UIP. This site itself should be renamed

at Interstitial Lung Diseases and need to rename the Pulmonary Fibrosis

Foundation and Coalition for Pulmonary Fibrosis as they both represent

people with all forms of ILD's and not just " IPF " . The way both of them

have PF defined on their sites it is only UIP and doesn't include NSIP

or the other ILD's. The irony is that UIP wasn't even pulled out

separately as a form until fairly recently.

I now have a huge headache from this roundtable but happy about your

diagnosis versus what it could have been.

I promise no more symantics or terms discussion today.

> > > >

> > > > Hi all,

> > > >

> > > > I live in the Dallas area and just got back from spending a 4

week

> > > > vacation in Los Angeles. I took the kids to see their

grandparents

> > > > and friends. While I was there I was able to get an appointment

at

> > > > UCLA-Pulmonary & Critical Care. The pulmonologist said that I

did

> > > in

> > > > fact have Dermatomyositis and NSIP. He said that this will not

> > > turn

> > > > into Pulmonary Fibrosis. I'm looking for any opinions on this.

> > > > Sounds too good to be true. My pulmonologist here has always

taken

> > > > the " wait & see " road. This pulmonologist at UCLA was confident

> > > about

> > > > his evaluation.

> > > >

> > > > Any thoughts would be greatly appreciated,

> > > >

> > > >

> > > > 40/Tx: IPF, NSIP dx 09/2007 VATS

> > > > Pneumomediastinum, Atrial Fibrillations, Hiatal Hernia, and

> > > possibly

> > > > Dermatomyositis

> > > > 125mg Imuran / 10mg Prednisone / 25mg Metoprolol / 1,000mg

Niaspan

> > > >

> > >

> >

>

[Guest guest]

Bruce

I find all this very interesting and at the same time rather confusing. I have this "a" disease and am yet unsure what it is. But at the same time I would like to see more recognition of the disease and more funding for the disease research. Perhaps this discussion you are having here plays a very large part in effecting what is funded and recognized by support foundations. I am not speaking of IPF foundation or CPF but other outside funds available type organizations. I am sure over your career you have turned down studies because they did not appear to be clear to the researchers.

Do we need to standardize and stand fast on what we are making the public aware of and what we are asking for assistance with?

Just a thought as I try to keep up with what you are saying.

Fay

PF 06/06 IL

Re: NSIP & IPF Slight Restatement

I used the term Pulmonary Fibrosis interchangeably with ILD. When it isused to simply represent the scarring varieties then you're correct youdon't have fibrosis, you have inflammation. Technically the PulmonaryFibrosis Foundation handout would not call NSIP a form of PulmonaryFibrosis. It also uses IPF to represent UIP. So, we're all better off ifwe just think of ILD's and defining within them. You have an ILD knownas NSIP. I have an ILD known as UIP. This site itself should be renamedat Interstitial Lung Diseases and need to rename the Pulmonary FibrosisFoundation and Coalition for Pulmonary Fibrosis as they both representpeople with all forms of ILD's and not just "IPF". The way both of themhave PF defined on their sites it is only UIP and doesn't include NSIPor the other ILD's. The irony is that UIP wasn't even pulled outseparately as a form until fairly recently.I now have a

huge headache from this roundtable but happy about yourdiagnosis versus what it could have been.I promise no more symantics or terms discussion today.> > > >> > > > Hi all,> > > >> > > > I live in the Dallas area and just got back from spending a 4week> > > > vacation in Los Angeles. I took the kids to see theirgrandparents> > > > and friends. While I was there I was able to get an appointmentat> > > > UCLA-Pulmonary & Critical Care. The pulmonologist said that Idid> > > in> > > > fact have Dermatomyositis and NSIP. He said that this will not> > > turn> > > > into Pulmonary Fibrosis. I'm looking for any opinions on this.> > > > Sounds too good to be true. My pulmonologist here has alwaystaken> > > > the "wait & see" road.

This pulmonologist at UCLA was confident> > > about> > > > his evaluation.> > > >> > > > Any thoughts would be greatly appreciated,> > > > > > > >> > > > 40/Tx: IPF, NSIP dx 09/2007 VATS> > > > Pneumomediastinum, Atrial Fibrillations, Hiatal Hernia, and> > > possibly> > > > Dermatomyositis> > > > 125mg Imuran / 10mg Prednisone / 25mg Metoprolol / 1,000mgNiaspan> > > >> > >> >>