PDA

View Full Version : What to call ourselves



Dryhill
12-09-2011, 09:40 AM
If we stop using the name Wegeners Granulomatosis for our fun disease and start using the new name Granulomatosis with Polyangiitis, what are we going to call ourselves? We will have to stop using weggies, would granules or pollys be ok? Come on lets have some suggestions.

Jim

pberggren1
12-09-2011, 09:41 AM
I won't use the new name and neither will my doc so I will always be a Weggie.

Dryhill
12-09-2011, 11:48 AM
Good for you and you doc, I really cannot see why the name needs to be changed after all these years. That is realy the point of my thread to show the stupidness of the change.

Psyborg
12-09-2011, 11:54 AM
Maybe we can all be GranPA's ? :p

Geoff
12-10-2011, 12:09 AM
Thats really cool Bob!!

I agree with the others here, I will always be a Weggie!

Hammy8241
12-10-2011, 01:41 AM
I can see no good reason why they decided to change the name other than someone wanted a bit of publicity for themselves. Weggie for ever!

Psyborg
12-10-2011, 02:14 AM
I actually understand it, but think it is silly. A name is just a name. I think the man was morally reprehensible, but that doesn't mean he should have his name blotted out. I'm probably weird though, kind of a history junky. :)

Hammy8241
12-10-2011, 02:29 AM
I actually understand it, but think it is silly. A name is just a name. I think the man was morally reprehensible, but that doesn't mean he should have his name blotted out. I'm probably weird though, kind of a history junky. :)

I guess im in the majority of one, but the fact that the name can be linked to the Nazis actually makes it a better name for the disease. Whatever name/word you can think of to describe them, relates very well to one aspect or another of WG, Nasty, evil, sneaky, morally reprehensible and so on.

But I do agree that its only a label and on life’s list of great things to worry about, it comes very low down on the list BUT if i die from this disease and some snotty nosed Dr enters GPA as cause of death, I promise that I will come back and haunt them forever!!!!!:biggrin1:

NicShaf
12-10-2011, 04:02 AM
Along the lines of Weggies...we could be GRANNIES...but that could get confusing, hahahaha:)

chrisTIn@
12-10-2011, 09:47 AM
I actually understand it, but think it is silly. A name is just a name. I think the man was morally reprehensible, but that doesn't mean he should have his name blotted out. I'm probably weird though, kind of a history junky. :)

In the Europeen mainland/on the continent the occupation by the nazi's and the crimes against humanity they committed will never be forgotten. People of the post-war generation learn the stories of their parents and grandparents, in school during history lessons their is much awareness of the misery caused by the second World War.

When I was in Hawaii. I visited Pearl Harbour, where the American involvement in the worldwide battle begun during the years 1940-1945.
To see the memorial there had a great impact on me, because I also saw the 'killing fields' in France, where so many American men were killed by the German nazis.
Europe wouldn't be the same today, we owe our freedom here to the allied partners, which we never will forget.

But, to stay on topic, I also like the name 'Weggie'.
If Wegener hadn't described our disease, who WOULD have?
That is still the question, I suppose...

Chris G
12-10-2011, 11:41 AM
I don't like change in general. I don't like the new name...nor will I use it. I have wegener's. Huh? Wagners? No. Wegeners. That's hard enough. I don't have the patience to say granulomas with polyarteritis over and over.

Dryhill
12-10-2011, 12:08 PM
I guess im in the majority of one, but the fact that the name can be linked to the Nazis actually makes it a better name for the disease. Whatever name/word you can think of to describe them, relates very well to one aspect or another of WG, Nasty, evil, sneaky, morally reprehensible and so on.

I think this sums up Wegeners perfectly. I am pleased that so many people intend to stick with the original name. When I started this thread I thought this might be a fun way of finding what peoples feelings are about the name change.

Bob, I like your suggestion, that should really confuse people.

Jim

Tippon
12-13-2011, 12:07 AM
I've heard that the name change is so that it makes it easier for doctors to diagnose e.g. Wegeners doesn't really mean anything to them, but Granulomatosis with Polyangitis is more descriptive. Don't know how true that is, but it sounds plausible :smile1:

Hammy8241
12-13-2011, 03:37 AM
I've heard that the name change is so that it makes it easier for doctors to diagnose e.g. Wegeners doesn't really mean anything to them, but Granulomatosis with Polyangitis is more descriptive. Don't know how true that is, but it sounds plausible :smile1:

I think if that was the case then they would have to re write the medical dictonary. Mind you that would help with the unemployment numbers.

Tippon
12-13-2011, 04:09 AM
Not really, it would just be changed over the next few updates. e.g. Under Wegeners - see GPA, under GPA you would have (formerly known as Wegeners).

Hammy8241
12-13-2011, 05:21 AM
Not really, it would just be changed over the next few updates. e.g. Under Wegeners - see GPA, under GPA you would have (formerly known as Wegeners).

No mate, what I meant was there are one hell of a lot of names which don't easliy relate to what the symptoms are: ie. measles - new name - itchy, scratchy and dotty!

A new thread?

Tippon
12-13-2011, 06:25 AM
Ah, sorry, I get what you mean now. I'm a bit slow lately (I'm blaming the meds :unsure::flapper: )

Dryhill
12-13-2011, 10:44 AM
It is possible that some of the reason for the name change is to help with diagnosis, because a few of the other vasulitis names have changed.

julia
12-13-2011, 11:27 AM
I have read that they are updateing/changing many diseases named after people. Like our disease they want the name to represent the "condition". I do not mind the change.

names
Granpollys, grupies, pollygrans,

Sangye
12-13-2011, 01:48 PM
I think the new name is just stupid. :flapper:

rif
12-13-2011, 09:32 PM
Would the name change result in more funding available for research into WG?

Hammy8241
12-13-2011, 10:35 PM
Would the name change result in more funding available for research into WG?

Arguably, the name change would raise awareness of the disease for a while but i can't see increased funding being a benefit. On the contrary, there has to be a increase of costs letting people know of the "change", the reprinting of letterheads/publications etc.

Yet another case of "if it aint broke -Oh, we'll change it syndrome!!"



They should put the people who thought of it on pred - they would soon forget what they were trying to do....or maybe they are:wink1:

rif
12-14-2011, 12:14 AM
Another huge waste of money reprinting because of name change. Bet one of these new managers brought in to save the NHS money thought of it to justify their huge salary:angry:
The latest cost cutting exercise for appointments is now instead of booking with receptionist in the clinic before you leave, they are now going to send a letter asking you to telephone them and make an appointment, they will then send another letter confirming this. Excuse is that pre-booked appointments resulted in lots of people forgetting about them and clinic hours wasted. My son always receives at least three text messages in days leading up to his regular visits, not that he would ever forget something so important anyway.

Sangye
12-14-2011, 04:07 AM
The receptionist at JHU says a lot of people either forget or ignore their appointments-- even people who pleaded to get in sooner! I can't imagine forgetting either.

As far as the name change, the reason is that the GPA name says exactly what the disease does, making it easier for doctors to know what they're dealing with. I think they have ER docs in mind, in particular. It's gonna take a long, long time to undo the old name, if ever. Basically it'll be "What's she got?" "GPA" "What??" "It used to be called Wegener's." "Oh, right."

delorisdoe
12-14-2011, 04:11 AM
The receptionist at JHU says a lot of people either forget or ignore their appointments-- even people who pleaded to get in sooner! I can't imagine forgetting either.

I was guilty of this for the first few years of my illness-pre diagnosis. The rheumy I finally got to listen to me YELLED at me for skipping appts with the pulminologist I saw. She said "do you know how lucky you are to have HIM as a doctor, how dare you". I have not forgot intentionaly or otherwise since.

Dryhill
12-14-2011, 09:42 AM
It's gonna take a long, long time to undo the old name, if ever. Basically it'll be "What's she got?" "GPA" "What??" "It used to be called Wegener's." "Oh, right."

Sangye, that is exactly what I think will happen.

Jim

Al
12-14-2011, 02:57 PM
Sangye, that is exactly what I think will happen.

Jim

On the other hand, it could be that the sheer novelty could be salient for diagnosticians. I am sure that, as with most autoimmune diseases, many doctors are reticent to render a Wegener's diagnosis, not because they mistrust it, but from sheer unfamiliarity--especially is it does not directly involve their specialties.

Fo what it is worth, the latest proposal from the gurus at Chapel Hill calls for six different names: 1) Microscopic polyangiitis (MPA); 2) Renal-limited pauci immune glomuleronephritis; 3) Respiratory granulomatosis (limited Wegener's granulomatosis); 4) Granulomatosis with polyangiitis (Wegener's); 5) Churg-Strauss Syndrome (Allergic granulomatosis polyangiitis), and 6) Limited Churg-Strauss Syndrome (Allergic granulomatosis, without polyangiitis). These names account for the possibilities that granulomatosis may or may not be a defining issue, and vasculitis may or may not be a defining issue. Additionally, each of these may be P-ANCA positive, or C-ANCA positive, or both--or, in a few cases, ANCA negative.

Does this clear things up, or make it more confusing? Does it encourage or discourage diagnosticians from taking the various forms seriously? I can't tell you--not yet, at any rate. But how about from the patients' point of view? To my ears, which (fortunately for my income, still work), the term "Weggies" makes better poetry (it is also more inclusive) than "Grannies" , "Guppies", "Muppies", or "Cussies". Forget about "Rel-piggies".

Al

jola57
12-14-2011, 03:28 PM
Al, you do crack me up :biggrin1:

vdub
12-14-2011, 05:10 PM
Geeps! That'd be my pickfor names.....

As for appoinments.... I have never forgotten or even been late for an appt. I'm usualy 15 minutes early. After a career of the military, you don't easily lose that kind of discipline and sense of responsibity....

It was well ingrained into my kids at an early age, too. They are always punctual.

When I was still working and had a doc appt, I would give them 10 minutes from the time my appt was until they saw me. If they weren't on schedule, I left. Their time was no more valuable than mine. They got the message. Now I'm retired and my time is worth diddly, so I don't care if they are late -- I read magazines.

Kami
12-15-2011, 04:51 AM
Fo what it is worth, the latest proposal from the gurus at Chapel Hill calls for six different names: 1) Microscopic polyangiitis (MPA); 2) Renal-limited pauci immune glomuleronephritis; 3) Respiratory granulomatosis (limited Wegener's granulomatosis); 4) Granulomatosis with polyangiitis (Wegener's); 5) Churg-Strauss Syndrome (Allergic granulomatosis polyangiitis), and 6) Limited Churg-Strauss Syndrome (Allergic granulomatosis, without polyangiitis). These names account for the possibilities that granulomatosis may or may not be a defining issue, and vasculitis may or may not be a defining issue. Additionally, each of these may be P-ANCA positive, or C-ANCA positive, or both--or, in a few cases, ANCA negative.

Al

My Rheumy now calls it ANCA POSITIVE VASCULITIS which I think is more like what you are saying Al. My daughter and I are starting a chapter of the VF in our area and they call it GPA so I guess I will have to get used to calling it that in our group but I will always be a Weggie and will continue to call it that as well.:unsure:

Al
12-15-2011, 05:46 AM
My Rheumy now calls it ANCA POSITIVE VASCULITIS which I think is more like what you are saying Al. My daughter and I are starting a chapter of the VF in our area and they call it GPA so I guess I will have to get used to calling it that in our group but I will always be a Weggie and will continue to call it that as well.:unsure:

The proposal would presumably try to narrow things down a bit, Kami. "ANCA Positive Vasculitis" is a pretty general term that could apply to MPA, BPA, or CSS, or at least some forms of this. More defining would be to include, if appropriate, "with granulomatosis". Nevertheless, your point is well taken: We are all Weggies!

Al

Dirty Don
12-15-2011, 05:52 AM
We are all Weggies!Al

WEGGIES of the world unite!! We are all one, one for all, blah blah blah! Now that killed it, didn't it!! LOL

Al
12-15-2011, 06:26 AM
WEGGIES of the world unite!! We are all one, one for all, blah blah blah! Now that killed it, didn't it!! LOL

(Et tu, D'Artagnan?)

Dirty Don
12-15-2011, 08:35 AM
(Et tu, D'Artagnan?)

Not really sure right now, I need an Athos or someone to set me straight cuz I tend to chase windmills if not kept on track...hehe

Al
12-15-2011, 12:40 PM
Not really sure right now, I need an Athos or someone to set me straight cuz I tend to chase windmills if not kept on track...hehe

Yes, indeed, Don. Your Athos is a Dionysian Messkiteer who rocks all boats with the rising tide. And if your quixotic quest gets corked in Kilarney, you can always tilt at rainbows. Maybe your power fade will land in a tin cup of gold!

Al

freakyschizogirl
12-15-2011, 09:35 PM
Yes, indeed, Don. Your Athos is a Dionysian Messkiteer who rocks all boats with the rising tide. And if your quixotic quest gets corked in Kilarney, you can always tilt at rainbows. Maybe your power fade will land in a tin cup of gold!

Al


I've got no idea what any of that meant, apart from the last sentence!

Al
12-16-2011, 04:32 AM
I've got no idea what any of that meant, apart from the last sentence!

Sorry! Don was a schoolteacher, so we have a running battle to see who can push the other fellow's already pred-soaked mind over the edge; hence the odd allusions to Shakespeare, Dumas and all kinds of stupid stuff. Just think of it as the rantings of a couple of sick old men under the influence of a waning moon.

Al

pberggren1
12-16-2011, 11:35 AM
I've got no idea what any of that meant, apart from the last sentence!

Don't you read Sam?

Dryhill
12-16-2011, 12:10 PM
Sorry! Don was a schoolteacher, so we have a running battle to see who can push the other fellow's already pred-soaked mind over the edge; hence the odd allusions to Shakespeare, Dumas and all kinds of stupid stuff. Just think of it as the rantings of a couple of sick old men under the influence of a waning moon.

Al, are you sure those were normal mushrooms you had with your dinner? Was there really nothing magic about them?

Jim

Al
12-16-2011, 02:04 PM
Al, are you sure those were normal mushrooms you had with your dinner? Was there really nothing magic about them?

Jim



Dunno what happened, Jim. I just picked up some fungus that said "eat me". Very nice, sautéed with garlic in olive oil. Beautiful moon tonight, eh?

Al

Dirty Don
12-16-2011, 02:09 PM
Al, are you sure those were normal mushrooms you had with your dinner? Was there really nothing magic about them? Jim

Mushrooms? did someone say, er, whisper musssshhhhhroooommms...now it propofol, fentanyl, and waaaaayyyyy more effective! Those were the beginning of my WG super flare this summer...whatever that is...it almost killed me save for the drugs...but, mussssshhhhhhrrrooooooommmmms....I don't remember those days but they were the days!! LOL

Al
12-16-2011, 02:15 PM
Mushrooms?...but they were the days!! LOL
How do you remember, Don...?

Al

Dryhill
12-17-2011, 11:25 AM
Dunno what happened, Jim. I just picked up some fungus that said "eat me". Very nice, sautéed with garlic in olive oil. Beautiful moon tonight, eh?

Al, I have never had any mushrooms speak to me, it is always the rabbits and foxes that tell me which mushrooms to eat .......... honest officer

Lightwarrior
12-17-2011, 11:30 AM
How do you remember, Don...?

Al

If you can remember then you weren't there.

Dirty Don
12-17-2011, 11:41 AM
If you can remember then you weren't there.

Exactly...but it felt really good! officer, the wabbit, the wabbit...he escaped down the hole...seee!

Al
12-17-2011, 12:33 PM
Al, I have never had any mushrooms speak to me, it is always the rabbits and foxes that tell me which mushrooms to eat .......... honest officer

Hmmm....Wonder what Alice would have said to that, Jim? Were they, possibly, Cheshire rabbits and foxes?

Al

Al
12-17-2011, 12:34 PM
If you can remember then you weren't there.
(Were those the days? Anyone remember...?)

Al
12-17-2011, 12:38 PM
Exactly...but it felt really good! officer, the wabbit, the wabbit...he escaped down the hole...seee!

Well, he said he was late--for opera rehearsal....

(Note: my apologies to those who aren't Lewis Carroll and Chuck Jones fans!)

Al

Dirty Don
12-17-2011, 02:53 PM
(Note: my apologies to those who aren't Lewis Carroll and Chuck Jones fans!)Al

Well done Al...you ARE observant! Mushrooms and comedy go together well!!

Al
12-17-2011, 04:18 PM
Well done Al...you ARE observant! Mushrooms and comedy go together well!!

Nyehh--What's opera, Doc--I mean, Don? Madame Mutsutake? Anna Boletus? Dido and Amanita? Sporefeo ed Euridice?

Al