New Name for WG

[sue7211]

I just found out a couple of weeks ago that WG had been renamed as Granulomatosis with Polyangiitis (GPA). My son's doctor said that they're trying to get away from disease names that are named for a person and trying to have more descriptive names. My son said WG was difficult enough to say and now they made it even harder!

Will anyone be a the the patient symposium in Raleigh, NC next month?

Sue

[delorisdoe]

I for one hope they change the name i like it better. plus, my head doctor is jewish and considering what this wegner fellow is believed to have done i would like for him not to have a paitient with a disease named after such a bad man.
leigh

[drz]

I just found out a couple of weeks ago that WG had been renamed as Granulomatosis with Polyangiitis (GPA). My son's doctor said that they're trying to get away from disease names that are named for a person and trying to have more descriptive names. My son said WG was difficult enough to say and now they made it even harder!

Will anyone be a the the patient symposium in Raleigh, NC next month?
Sue

Now we have to learn to spell it all over again but it sounds better to me to ask some one how is your GPA?

Yep, its true. Here is a link where they refer to by new name with Wegener's in parentheses :

Patient Education - Granulomatosis with Polyangiitis (Wegener's) (http://www.rheumatology.org/practice/clinical/patients/diseases_and_conditions/wegeners.asp)

[delorisdoe]

YES!!!!!!!!!!!!!! i no longer have wegners granulomatosis. :wink1:

[drz]

YES!!!!!!!!!!!!!! i no longer have wegners granulomatosis. :wink1:

Can't wait to tell everyone I no longer have Wegener's, I have GPA now.

[Sangye]

I don't like the new name! :thumbdn: So many people who get dx'ed with Wegs have a hard time getting the name right, and I can't imagine the confusion this new one is gonna cause.

[Sangye]

YES!!!!!!!!!!!!!! i no longer have wegners granulomatosis. :wink1:
LOL That's pretty funny.

[delorisdoe]

one of my husbands friends calls it wegner someones got my toes . gpa will be much easier for him. lol

[pberggren1]

I will have to see if my doc has heard of this next week.

[Kami]

My doctor says it is now called ANCA Positive Vasculitis and corrects me everytime I say Wegeners. It is hard to remember to correct myself though.

[delorisdoe]

but that would be true for all anca positive vasculitis would it not? p anca is most often churg straus i think. that would be confusing.

[pberggren1]

This is all to confusing for a pred head.

[DEE]

this is all to confusing for a pred head.
ditto phil

[Hammy8241]

Yuck! not any easier to pronounce.

Yet another 'politically correct' busy body trying to justify their highly paid salary - presumable getting a little desperate if they have got to the W's in their list!!

So they want to call it "lumps with many inflamed blood vessels" ? They could of added a bit on - whats the Latin for 'snotty nose', 'deaf old git', me joints hurt', etc etc.

It's the thought of having to explain to others that the new name is the same disease as the old name, the confusion it will create within the medical profession as if they don't have enough to do!

I don't like WG, but having been told I have got it, I'll stick with it thanks! ( not that i have a lot of choice:unsure:)

[Sangye]

So they want to call it "lumps with many inflamed blood vessels" ?
ROTFL My favorite. They should have let people with the disease vote!

[Sangye]

My doctor says it is now called ANCA Positive Vasculitis and corrects me everytime I say Wegeners. It is hard to remember to correct myself though.
If my doc corrected me like that I would not be very nice about it. When they have the stupid disease they can call it whatever they want. :flapper:

[Jack]

You would think that whoever was involved would have better things to do than to solve problems that don't exist. Changing the names of things usually just causes confusion rather than improving clarity.

[delorisdoe]

I am picturing mass of confused doctors running around. ok maybe not.

[gurinbasra]

I think I'm going to abbreviate the new name to "granny" 'cos every since I was diagnosed, I sure feel like one. I'm always saying to my kids when they're rushing me, hold on wait for granny to plug in her hearing aid and pop her pills, then we can go!

[freakyschizogirl]

This is just going to cause more confusion, its hard enough to get a diagnosis with Wegs as it is, now the doctors will be fighting amoungst themselves deciding what to call you.
:ohmy:

This is going to mean a huge shake up in medical terminology if its true, and what of the patients with Parkinson's, Chrohn's, Prader-Willi etc that will all be reclassified too! Also doesnt it take away the glory from the doctors and scientists that discovered the disease??

[delorisdoe]

I really don't think the proffessionals will be confused. It will most likely still have wegners in parenthesis. Besides this is all dr wegners fault.

[Sangye]

This is just going to cause more confusion, its hard enough to get a diagnosis with Wegs as it is, now the doctors will be fighting amoungst themselves deciding what to call you.
:ohmy:

This is going to mean a huge shake up in medical terminology if its true, and what of the patients with Parkinson's, Chrohn's, Prader-Willi etc that will all be reclassified too! Also doesnt it take away the glory from the doctors and scientists that discovered the disease??
They rename diseases like this all the time. Most of the time the new names don't stick well and everyone keeps referring to the old name. This new name for Wegs doesn't feel very sticky to me. :biggrin1:

[Chris G]

one of my husbands friends calls it wegner someones got my toes . gpa will be much easier for him. lol

OMG, that's hilarious!!! I LOVE it!!:lol:

[delorisdoe]

Ya, he is the only person I don't mind asking me how I am doing healthwise. I giggle every single time he asks me "how's gramas toes?''

[drz]

I was wondering what polyangiitis meant so I checked wikipedia:

Microscopic polyangiitis - Wikipedia, the free encyclopedia (http://en.wikipedia.org/wiki/Microscopic_polyangiitis)

It sounds like old Wegs without the granulomas.

[chrisTIn@]

This new name for Wegs doesn't feel very sticky to me. :biggrin1:

To me neither.
Still I´m curious whether it will be used much in scientific publications.
I wrote something about his topic on antother thread,
maybe the wrong one...:rolleyes1:
http://www.wegeners-granulomatosis.com/forum/weggies-stories/1609-immune-support-supplements.html

[freakyschizogirl]

If you google Granulomatosis with Polyangitis it still has (Wegs) in brackets like that. I dont think it'll stick either Sangye, well fingers crossed anyway. Dont fancy having to spell polangitis too many times with pred head!

And there's a far deeper tragedy here...no more getting excited when Wegeners gets mentioned on House!

A few people have hinted at something Mr Wegener did...He wasnt a nice man...? What did he do??

[Sangye]

Sam, Dr Wegener had ties to the Nazis.

Drz, polyangiitis means "many inflamed blood vessels." I guess they added it because WG doesn't mention the blood vessel aspect. Still, it's a stupid name, IMO. The only thing it's good for is for physicians learning diseases for Board exams. The name gives it away.

[drz]

I wonder if the new name was approved by the physicians congress that determine the ICD (International Classification of Diseases)

[Sangye]

I suppose it was. I don't think the American College of Rheumys would take such a renegade action on their own.

[Kimbangu]

It will also be interesting to see if the European Medical establishment follow suit with this re- naming business. For instance the French ( and some Canadians too, I guess) already have their "Maladie de Wegener".



What a strange affliction this damned thing is. They can't even agree on a NAME for it!

[Hammy8241]

Trouble is they don't think of the knock on effects of changing a name. All Marta's clothing and Wg items may need to be re-worked, Andrew will need to consider if/when he needs to alter the name of the forum/ add new search tags etc. Society's may have the cost of renaming stationary and so on. All seems to be a waste of money, time and effort which could be better directed into the research of this infernal 'bug'!

[Sangye]

I doubt those things will be a problem, Hammy. It takes decades to get people to adapt to changes like this. When I was in 3rd grade (1969) we were taught standard and metric measuring but were told the standard would be gone in the US within about 5 years. Here it is 42 years later and standard measuring units are still the norm here. And they still tell kids that metric is gonna take over here any day. LOL

I for one am not gonna tell my friends to call it "GPA." It sounds stupid. I talk about "Wegs" and make jokes about the "Wegs dog" with them. I'm not gonna start saying the "GPA dog." I'm putting my foot down. :laugh:

[gwenllian111]

My doctor says it is now called ANCA Positive Vasculitis and corrects me everytime I say Wegeners. It is hard to remember to correct myself though.

My WG is referred to as this too.

[gwenllian111]

GPA... I can see their thinking behind it, but GPA...? Could they not think of anything better??!

[Sangye]

I noticed that none of the major centers have changed the names for Wegs, nor have the VF or even Wikipedia. I think the new name is probably still being disputed. See? No one likes the stupid GPA name. :rolleyes1:

[pberggren1]

Let's just call it XXX! LOL:w00t:

[delorisdoe]

"The disease formaly known as wegner's".

Yes I am. Prince fan

[pberggren1]

I'm sorry for your taste in music delorisdoe. LOL:wink1::w00t:

[delorisdoe]

I will take that.

[Chris G]

"The disease formaly known as wegner's".

Yes I am. Prince fan
Really? Still?

[Sangye]

"The disease formaly known as wegner's".


ROTFL Perfect! http://www.smileyhut.com/laughing/rofl.gif (http://www.smileyhut.com)

[delorisdoe]

lol. I dont know I have never thought about it. I know all of his songs by heart but i know the words to pretty much every song i have ever listened to more than once. I also saw him in concert. He is by far NOT the most embarassing concert I have been to though. Not by a long shot.

[pberggren1]

The most embarassing concert I ever went to was the local Symphony and I was in the front row and farted very loudly just before they were to begin.

[delorisdoe]

my friend and i went to see milli vanilli-enough said

[ScreaminMeanie]

If it's Granulomatosis with Polyangiitis (Wegener's), shouldn't the abbreviation be GPAW? And there's your dog reference! LOL

[Sangye]

The most embarassing concert I ever went to was the local Symphony and I was in the front row and farted very loudly just before they were to begin.
Omigosh, that made me laugh! Think of those poor musicians having to perform and not crack up laughing!

[Sangye]

If it's Granulomatosis with Polyangiitis (Wegener's), shouldn't the abbreviation be GPAW? And there's your dog reference! LOL
It oughta be G-POW because that's how it makes you feel!

[freakyschizogirl]

Surely it should be down to the patients who decide what its called? Its our disease after all, we need to reclaim it! lol.

[delorisdoe]

would a rose not smell the same if it were not called a rose?:wink1:

[delorisdoe]

It still stinks. lol

[malin]

Googled GPA, these were some of the things that came up....

grade point average (GPA) - as in Educational grades
Greyhound Pets of America
Gaelic Players Association
Gay Police Association
Intel® Graphics Performance Analyzers
and
Group and Pensions Administrators

Now, I'm not really sure something like Wegs would "fit" in amongst these...... :p
Hehe, imagine doing a search in the future looking for GPA (Wegs) and google gives you Greyhound Pets of America. Personally, that would make me very confused as a newly diagnosed person. Might make me think my doctor is writing some prescriptions for himself............

[ScreaminMeanie]

LMAO!!!

I think I'd rather be identified with the Gay Police Association than any of the others. And I'm not even gay. ;)

[Sangye]

Hilarious!!!:lol:

[MCC]

I am sticking with wegeners, I find granulamotosis hard to pronounce!! :biggrin1:

By the way, do most of you say Weg-e-ners or Vay-gey-ners? I've heard both by my doctors...I saw Weg.

[ScreaminMeanie]

I am sticking with wegeners, I find granulamotosis hard to pronounce!! :biggrin1:

By the way, do most of you say Weg-e-ners or Vay-gey-ners? I've heard both by my doctors...I saw Weg.

The first is the way I've heard every doctor in the US pronounce it. The second is the German pronunciation, and the way Dr. Wegener himself likely pronounced it. I say Weg-uh-ners. Or "this silly disease." ;)

[Sangye]

With a W. It sure acts more like a VAGUE-uh-ners, though. :rolleyes1:

[ScreaminMeanie]

With a W. It sure acts more like a VAGUE-uh-ners, though. :rolleyes1:

:laugh: :laugh:

[delorisdoe]

The useless resident I saw on Thursday called it vag a ners. I wanted to smack her every time she said it.

[pberggren1]

I cannot understand speech anymore so it doesn't matter to me how it is pronounced or what it is called. It is just a darn frigging disease.

[mishb]

The ENT I first saw (after 12 months of sinus symptoms - I already had RA for quiet some tine prior to the sinus and eyes) looked at me and said I think you have Vaygunners Granu...what the what this suss. My husband and I looked at each other and then asked him to repeat it again. When he repeated it I swear all we heard was Charlie Browns teacher going blah blah blah. We got in the car and tried to google this strange word on the Iphone to see what he was saying and found nothing. It wasn't until we were waiting at Pathology to have the blood tests he ordered and we looked at the request and right down the bottom said - suspected Wegeners Granulomatosis. Nothing at all like what he had said, but I thank the lord for this first ENT.. everyday.
I still find it so funny everytime I see him or his son.... His son is the reason why he (at retiring age) knew of WG because the son actually did a thesis on it during his residency days, but they still both say the name the same way with the 'V'

Michelle

[Psyborg]

I hope they point of the change is to be more descriptive rather than simply to be politically correct on some level. The idea of erasing someone's discovery based on the fact that they did other reprehensible things seems vaguely creepy to me. Mind you I think some of the stuff he was involved with was horribly disgusting, but I don't know sometimes evil people contribute good things...kind of hard to explain what I mean I guess.

[Sangye]

I haven't seen this new name appear anywhere other than that link so far. They've been using another new name in research (ANCA-Associated Vasculits, or AAV) for awhile. So I don't think GPA is likely to replace WG for some time to come!

[gwenllian111]

My Rheumy said the name (UK) was now Granulomata Vasculitis.

?

[gwenllian111]

Whatever it is, we should all be properly informed! LOL :rolleyes1:

[Sangye]

My Rheumy said the name (UK) was now Granulomata Vasculitis.

?
Good grief, that sounds like the scientific name for a plant!! "What a lovely granulomata vasculitis you have. Does it need a lot of sun?"

[pberggren1]

Good grief, that sounds like the scientific name for a plant!! "What a lovely granulomata vasculitis you have. Does it need a lot of sun?"

I was thinking the same thing. :laugh::laugh::laugh:

[Sheena]

Just found this on the Web - I do not like the change at all, GPA is a grade score that you get at school in Australia and is so not reflective of what this disease is!!!!



Accepted 31 January 2011

The Boards of Directors of the American College of Rheumatology (ACR), American Society of Nephrology (ASN) and the European League Against Rheumatism (EULAR) have recommended a gradual shift from honorific eponyms to disease-descriptive or aetiology-based nomenclature.

The leadership of these three organizations tasked an international group of senior academicians expert in the care of patients with vasculitis and engaged in research in the field to provide the medical community with proper descriptive terms instead of the names for Wegener's granulomatosis, Churg–Strauss syndrome, and Behçet's syndrome. The move towards a vasculitis terminology based on pathology, rather than historical reference, was triggered by evidence that Dr Friedrich Wegener was a member of the Nazi party

[RCOSSIO]

I will be nobody's "POLLYANNA" or whatever you call it :predrage:

[GARYfromBOSTON]

Well they don't know what causes it, don't know how to cure it, have trouble diagnosing it, and seem to guess more often than not for treatment

....so I think renaming it can't cause more confusion than there already is (although I do hate the new name)

[freakyschizogirl]

To be honest i dont care if Dr Wegener was involved in the Nazi party....( i know the history and all the atrocities that happened but as far as i know it has no baring on the diease)

Its confusing enough telling people what disease you have without using the words "google it" after you've spelt it out to them.

[RudiK]

Well said, Gary.
Rudi K.