The site address and name should change - Wegeners Nazi links are deeply offensive

[Cekmsover]

Hi All,

I think this site is a fabulous and much needed resource for those us dealing with such a life changing disease every day, day in day out.

The name of our illness reflecting a German Nazi is deeply offensive to myself and others battling the illness I know.

My family has a long history of being ex serviceman of world war 1 and world war 2, and the term Wegeners has never sat well with me or my grand father who served in World War 2. He is now deceased and every year I march in Anzac day parades shouldering his war medals with great honor.

As you will now see in the medical literature, Friedrich Wegener had his accolades from the ACCP rescinded (http://en.wikipedia.org/wiki/Rescission) and a campaign has begun to rename Wegener's granulomatosis (http://en.wikipedia.org/wiki/Wegener%27s_granulomatosis) to ANCA-associated granulomatous vasculitis

Friedrich Wegener - Wikipedia, the free encyclopedia (http://en.wikipedia.org/wiki/Friedrich_Wegener)

I propose Andrew that you re name the URL of this site and have a page dedicated to the history of this illness, however reflect the correct naming of the illness as ANCA Associated Vascuiits or GPA (Granulomatosis with polyangiitis).

Who shares a similar though on this?

Cekmsover.

[pberggren1]

You are in a minority. It is not offensive at all. First off there is no proof he was a Nazi. And even if he was all docs I talk to would rather stay with Wegener's.

[Alysia]

Hi,
I am jewish. The issue of the Holocaust is very close to my heart, as you can guess, and it is in my veins, so to say. eventough my family was not in Europe at the war, I know a lot of Holocaust survivers and I am working with them in psychotherapy as a clinical psychologist. I heard hundreds of testimonies from survivers over the years. I read and see many books and papers and movies of all kinds and went to all possible museums. since I learned to read, I read every paper that I found about the Holocaust.
Yes, Wegener WAS a Nazi. I remember finding papers about that. BUT this is the name of our illness, which btw is a "nazi" illness, and if we want to help others with it, it will be better to remain with that name, to help people to find us. it doesnt matter who's name is it, as long as we can help people. so changing the name might hurt because needed sick ones might not find us.
if we really want to "fight" the Nazi's legacy we need to do it in another ways, name is nothing. as for the other ways, I think that the forum rulles are against politics so I will not add about it.

[Cekmsover]

I don't agree with you at all Phil, your Doctors are more likely to refer to this term as a habit.

For you to say it is not offensive at all is ridiculous, clearly you didn't read the title of my post as many do find it offensive, and you clearly haven't done your research on his background. Some people can wade over history as if it never happened.

[pberggren1]

Take it up with Andrew then. He is the boss. It does not matter if he was a nazi or not. What matters is that he figured out this was a disease. So we owe him some gratitude to say the least.

[mishb]

Hi Cekmsover. We haven't seen you on here for a while - I hope all is well.

You mention that you march in the ANZAC parade each year - are you from Oz or NZ?

We also had this discussion on our facebook group page and decided to name the group WG/GPA Australia and New Zealand.

[Alysia]

We also had this discussion on our facebook group page and decided to name the group WG/GPA Australia and New Zealand.
curious, what was the bottom line, if there was one ?

[BookNut]

Hi,
I am jewish. The issue of the Holocaust is very close to my heart, as you can guess, and it is in my veins, so to say. eventough my family was not in Europe at the war, I know a lot of Holocaust survivers and I am working with them in psychotherapy as a clinical psychologist. I heard hundreds of testimonies from survivers over the years. I read and see many books and papers and movies of all kinds and went to all possible museums. since I learned to read, I read every paper that I found about the Holocaust.
Yes, Wegener WAS a Nazi. I remember finding papers about that. BUT this is the name of our illness, which btw is a "nazi" illness, and if we want to help others with it, it will be better to remain with that name, to help people to find us. it doesnt matter who's name is it, as long as we can help people. so changing the name might hurt because needed sick ones might not find us.
if we really want to "fight" the Nazi's legacy we need to do it in another ways, name is nothing. as for the other ways, I think that the forum rulles are against politics so I will not add about it.

I must say, I DO like the imagery of fighting the Evil Nazi Disease. Ultimately good will triumph over evil.

[LisaT]

I have learned about and been wounded by the horrors of the holocaust since I was old enough to understand, although nobody can ever truly understand such evil. I don't think we owe any nazi any gratitude for anything. Much of what they learned or recorded about medicine came from torturing and experimenting on live human beings. I would prefer to call the disease by a different name. Yes, the disease is a nazi too, but I don't want a nazi's name having anything to do with me or my body. I don't have a choice about having the disease, but we do have a choice about what to call it. Phil, I don't think it's fair to say someone is in the minority unless you've actually taken a poll of all forum members. Has someone done so? It would be easy to change the name but have the site still come up in search results when someone searches the old name. I've reverted to calling it WG just because everyone else does and I don't have the energy to be a revolutionary. But I had to chime in and say I agree with cekmsover.

[LisaT]

You are in a minority. It is not offensive at all. First off there is no proof he was a Nazi. And even if he was all docs I talk to would rather stay with Wegener's.

Offensiveness is subjective. There is no right or wrong, necessarily, and where a line needs to be drawn for legal or other societal reasons it's just drawn where public opinion tends to draw it or the average persons morality draws it. If he thinks it's offensive, then it is,.. To him. But not to you. I think the rest of the world has accepted that he was a nazi and that's why he's been divested of his honours.. What evidence would it take to convince you? People also deny the holocaust, but we all know it happened.

[LisaT]

One last thing; interesting link to other medical/disease names including nazis (along with their 'medical' war crimes), most of which have now been changed:

List of medical eponyms with Nazi associations - Wikipedia, the free encyclopedia (http://en.m.wikipedia.org/wiki/List_of_medical_eponyms_with_Nazi_associations)

Note the name of our disease has been changed and we are hanging on to the old name, just as some of the doctors are, for reasons of convenience, habit or whatever else. The name actually makes my illness feel even worse to me. It's like adding insult to injury. Phil, how would you feel if it was named after someone who tried to kill all the Catholics and conducted experiments on them while they were alive and awake because he didn't consider them worthy human beings; or someone who willingly joined the group whose purpose was to do so, lived right near where the atrocities were occurring, and most likely took part in them but we just don't have hard evidence of that because they burned and gassed all of the bodies. These are the images and associations the name invokes for me. We don't have definitive evidence of Wegener's war crimes, but that was the work of the nazi doctors. We do know for sure he was a nazi and that's enough for me. He joined the nazi party before it was mandatory and before there were ramifications for not being a member. So he chose it. And at the very least, he was complicit in the horror. I'm actually sort of hurt that people think a nazi should have any honour in any way for anything. Someone else would have figured out the disease. They just would have done so ethically.

[pberggren1]

Okie dokie then, GPA it is.

[LisaT]

Okie dokie then, GPA it is.
Seriously? That would make me very happy... Do others agree? :thumbsup:

[pberggren1]

Yes, I'm serious. Does not matter to me one way or the other. Message Andrew about it. I'm sure he would change it. But, having said that, if we change the name, then some people might not find us.

[mishb]

Yes, I'm serious. Does not matter to me one way or the other. Message Andrew about it. I'm sure he would change it. But, having said that, if we change the name, then some people might not find us.

This is the reason why we put WG/GPA on our fb group name.

Alysia this was the bottom line - many people said no to the name change and a few said yes - therefore we made it WG/GPA. It helps both ways to find us

[LisaT]

Okie dokie then, GPA it is.
I just re-read my earlier posts, and I hope you did not feel bullied. I have a tendency to rant when I feel strongly about something. I think this could be why my husband, who seems to be suffering some hearing loss as we age, refuses to look into whether he might need hearing aids. :lol: I know your wishing to use the old name was not personal or for any negative reason or support of the source of the name. Please know that my rant was against the Nazi regime and not our beloved Batman.

I have seen a number of sources refer to the disease as GPA (formerly WG) -- that might be a good way to go, as people will find the forum with either search term, but will know the name has changed and can find out why if they don't know. Ultimately, I think it's probably Andrew's decision since he started and runs the forum and does all of the work. But I could be wrong. I'm not sure how such decisions are made here.

[pberggren1]

No worries Lisa. I know what are saying. I still love you.

[Cekmsover]

This is a reply to all. The idea of my post last night was not for conflict between one another, and I acknowledge i could have opened it up more positively.

I feel your pain Phil and we are in this together, my 2 and 4 year old children don't understand why Dad cant do everything with them and the other dads can, so it just to repeat its a daily mission for all of us, but like Lisa says, it does sit uncomfortably to be refereed to a Doctor who seems to have been involved in war crimes.

[marylz]

Yes, I agree if Andrew is willing to do it.

[annekat]

I would be more comfortable calling it Wegener's/GPA or some such combination. It is taking us long enough to get people to be aware of what Wegener's is and to recognize it as a real and serious illness.... by "people" I mean not only the general population but our friends and families and everyday acquaintances who seem to have a hard time grasping it. GPA sounds so bland and it will even more go in one ear and out the other. Granulomatosis with Polyangiitis is impossible to say and will put up more barriers to people listening about it. People will want to know what GPA stands for and then their ears will close up when they hear the answer. Wegener's rings a bell with more people and is easier for them to remember. To get them that way with GPA may not be impossible but is like starting over. We will always say "it used to be called Wegener's", so why not just call it that. Alysia is right that it is just a name. It's not that I can't see the other point of view, too, and I could probably go either way. But we aren't going to be able to force anyone to stop calling it Wegener's, and calling it that does not mark anyone as being indifferent about what happened in the holocaust. If the name of the forum is changed, I will probably be able to accept it as something positive, but do think it could cause confusion among people out there looking for us. Truly, this is just my two cents worth at the moment, from what I hope may be seen by some as a logical point of view. I have not ruled out other points of view.

[LisaT]

I would be more comfortable calling it Wegener's/GPA or some such combination. It is taking us long enough to get people to be aware of what Wegener's is and to recognize it as a real and serious illness.... by "people" I mean not only the general population but our friends and families and everyday acquaintances who seem to have a hard time grasping it. GPA sounds so bland and it will even more go in one ear and out the other. Granulomatosis with Polyangiitis is impossible to say and will put up more barriers to people listening about it. People will want to know what GPA stands for and then their ears will close up when they hear the answer. Wegener's rings a bell with more people and is easier for them to remember. To get them that way with GPA may not be impossible but is like starting over. We will always say "it used to be called Wegener's", so why not just call it that. Alysia is right that it is just a name. It's not that I can't see the other point of view, too, and I could probably go either way. But we aren't going to be able to force anyone to stop calling it Wegener's, and calling it that does not mark anyone as being indifferent about what happened in the holocaust. If the name of the forum is changed, I will probably be able to accept it as something positive, but do think it could cause confusion among people out there looking for us. Truly, this is just my two cents worth at the moment, from what I hope may be seen by some as a logical point of view. I have not ruled out other points of view.

Good points. I can see the logic in maintaining continuity for the sake of what little awareness there is of the disease... Which is probably why many doctors and patient groups still use wegeners. The problem is that the new name is so unwieldy and the acronym so non-descriptive. But I guess we don't get to choose our own name for it and must go with one or both of the existing names. I don't know what polyangiitis is or are. Does anyone? They should have just made it granulomatosis. Even that is a mouthful. I don't know what the solution is. I hate the association with a nazi (as is now obvious to everyone), but it is difficult to change...

[annekat]

Good points. I can see the logic in maintaining continuity for the sake of what little awareness there is of the disease... Which is probably why many doctors and patient groups still use wegeners. The problem is that the new name is so unwieldy and the acronym so non-descriptive. But I guess we don't get to choose our own name for it and must go with one or both of the existing names. I don't know what polyangiitis is or are. Does anyone? They should have just made it granulomatosis. Even that is a mouthful. I don't know what the solution is. I hate the association with a nazi (as is now obvious to everyone), but it is difficult to change...
Thanks, Lisa. You may have said it better than I did in your response. Yes, if they were going to change the name, they could have come up with a more manageable one. I think I read what polyangiitis is but it went in one ear and out the other. I don't think they can just call it granulomatosis because I think that word applies to more than just our disease. Maybe we should think of a prominent and accomplished Jewish physician or scientist who has made great headway in WG or other AI research and name it after him or her? But would he or she like that? Or name it after a victim of the holocaust who may have been affected by Dr. W and his ilk? Some on here have said they don't mind using a crappy person's name for such a crappy disease. Heck, I don't know.

Touching on some of what's been said here: what I read about Dr. Wegener doesn't offer many hard facts about whether he actually participated in experiments and I certainly think it is jumping to conclusions to say that he learned about Wegener's through these experiments. In fact I've read that a student of his actually discovered the disease but he just put his name to it by describing it and more or less took credit. If he joined the Nazi Party before it was mandatory, it could have been without knowledge of the horror they were ultimately going to perpetrate on civilization. I'm not letting him off the hook; he may well have been fully aware of everything and involved in it, or not; do we really know? Have other diseases been named after people who may have done bad things? Probably not, for the most part, or at least who've done things THAT bad (except for the others from Nazi Germany cited in one of the articles above, where the disease names were changed).. But things get named and the names stick. I don't know the solution, either.

[Beverly]

Hi Y'all. Oh my goodness....there are so many things going thru my mind about this subject. I certainly do believe that holocaust happened, horrific things were done and it is difficult to watch the films
A couple of years ago, one of my daughters asked me if I wanted to be associated with Wegener. I had not read up on it and said that I wasn't so concerned about the name, but was concerned about getting good care and being alive.
I have spent the last 2 days asleep...loosing those 2 days and hating what is going on in my body. I don't know how I would feel if I were in your shoes. Many of us have had atrocities happen to us in different ways, and I am not trying to compare and say one atrocity is grater than another. I dealt for many years with happened to me growing up. Without going into any detail, I still carried my dad's name and I was still his daughter. I carry my husband's name, but I am still my dad's daughter, even though he no longer is living. I do know there is great power in forgiveness.
I had to go again and search the new name. For me, I would like for it to be as short as possible. I finally got to where I could say and spell the wg name. Your are correct, LisaT, change is always difficult.
Since I am kinda in a head fog, better stop here and hope I have made some sense.
WG/GPA is ok w/me. I will have to try and explain to family, friends, nurses, doctors, etc.,

Blessings to all. Am so grateful for this forum and am really needing you all at this time while trying to get new doc, but don't think can wait until can see new one.

May not be able to reply again anytime soon, but will certainly be thinking of you!

[Alysia]

“Fear of a name increases fear of the thing itself.”
(J.K. Rowling (http://www.goodreads.com/author/show/1077326.J_K_Rowling))

I don't want us to fight over the name :sad: I want us to fight the illness.
so, the name should serve that purpose. if adding GPA can help more needed people to find us, lets do it.

I even have kind of "resistence" to delete the name. it's like destroying the buildings of Auschwitz and not letting tourists to come over there.
Let the name remain, as a memorial and "tombstone" to the Holocaust, to remember forever, and to not let anything like that happen, ever again.
PEACE.

[Fran]

'GPA' - if you google it, seems to either mean an academic grading or the trade name for a hard hat product. If you mention to anyone that you have something called GPA or Granulomas with Polyangiitis - you are met with either a shake of the head or a 'never heard of it - huh' ? reaction and that's the end of the conversation. At least with Wegener's you can say google it and know they will find relevant information and our website if they are that interested !!
The name Wegener's has been around for all these years and our lives are now littered with acronyms for everything under the sun (which at my age are beginning not to mean a darn thing) so I agree Wegener's/GPA would be more recognisable a name. I agree Wegener did work for the nazi regime but we wouldn't want a good mans name for our crappy illness would we ?

Just my two penn'th for what it's worth.

Fran

[mishb]

My doctor advised me that all people in the medical field know what Granuloma's and Polyangiitis is.

Polyangiitis means inflammation of blood vessels.

It really is as easy as that - inflammation of the blood vessels also containing granuloma's.

I, for one, still prefer WG

[aewaustin]

I feel strongly that we should live in the present, and presently people know of this disease as Wegners and when they diagnosed they will google it and then they will find this godsend of a site. It would be horrible if folks missed finding this because the site was renamed.

Please know that I also hate the fact that he was a Nazi, but right now I want this site to continue as intended and to help as many people as possible and I think changing the name will make it so folks don't find the site. I have Wegeners and even after reading this thread I can't remember what the new name is. In Austin we renamed a lake to honor someone and folks still call the lake the old name, just don't think that the Wegeners name is going to go away for a very long time.

[annekat]

Some Googling comes up with some other names associated with the discovery of WG. This link mentions some of them and lists other names that have been used for WG:
Whonamedit - Wegener's granulomatosis (http://www.whonamedit.com/synd.cfm/2823.html) Here is an excerpt:

The condition was first described by Peter McBride (1854-1946) in 1897. The pathological-anatomical picture was described by Heinz Karl Ernst Klinger (born 1907), a German medical student, in 1931. Detailed description by Friedrich Wegener in 1936 and 1939.


There was also the name of Rossel on another site, who was apparently the professor of Klinger when he first "described" WG and was in a position to take credit for the "discovery". Klinger and Wegener are said to have been good friends, so I guess we don't want Klinger. This is the first I've heard of McBride and he sounds like the earliest to describe it. I haven't researched this guy but he doesn't sound like a Nazi. So maybe we should call it McBride's Granulomatosis. Or MG. Sounds pretty sporty.

[renidrag]

I was at a golf outing yesterday that raised money for WG. It was (and has been for four years) put on by a patient at Boston Medical center that has fought WG for thirteen years. Recently she flared and was having an awful time with treatments and insurance issues were withholding RTX. This has since been straightened out, thankfully. My point is the speaker at the outing was Dr. Paul Monach of BMC. He made a point to refer to our disease as Wegerner' Granulomatosis, and added the GPA. He said he refers to it this way because that is what people recognize and is still the main title of the disease, and that is probably the way it will remain. I have no doubt as years go by, the name will morph to GPA. Now? I don't think that when and if I go into a flare like this nice lady did, I'm not going to give a damn what the disease is named or why, (call me politically incorrect) please Doctor, make me feel better!
Dale

[LisaT]

Hi Y'all. Oh my goodness....there are so many things going thru my mind about this subject. I certainly do believe that holocaust happened, horrific things were done and it is difficult to watch the films
A couple of years ago, one of my daughters asked me if I wanted to be associated with Wegener. I had not read up on it and said that I wasn't so concerned about the name, but was concerned about getting good care and being alive.
I have spent the last 2 days asleep...loosing those 2 days and hating what is going on in my body. I don't know how I would feel if I were in your shoes. Many of us have had atrocities happen to us in different ways, and I am not trying to compare and say one atrocity is grater than another. I dealt for many years with happened to me growing up. Without going into any detail, I still carried my dad's name and I was still his daughter. I carry my husband's name, but I am still my dad's daughter, even though he no longer is living. I do know there is great power in forgiveness.
I had to go again and search the new name. For me, I would like for it to be as short as possible. I finally got to where I could say and spell the wg name. Your are correct, LisaT, change is always difficult.
Since I am kinda in a head fog, better stop here and hope I have made some sense.
WG/GPA is ok w/me. I will have to try and explain to family, friends, nurses, doctors, etc.,

Blessings to all. Am so grateful for this forum and am really needing you all at this time while trying to get new doc, but don't think can wait until can see new one.

May not be able to reply again anytime soon, but will certainly be thinking of you!


I really hope you feel better, Beverly! It sounds like you need to get a doc soon or even see an old one if need be; I can't remember at the moment why you need a new one. I'm in a head fog today too.

[LisaT]

Both of you make very good points, Alysia and Beverly. I've already said my very emotional knee-jerk piece, so I will leave it at that. I do think you've pointed out some valid reasons for not changing it too. Whatever the group and Andrew decide. I love that everyone here respects each other's views and keeps open minds even when there are differing opinions. :love::hug1::hug1:

[annekat]

I don't think it would hurt to add GPA to the name of the site, and it would get people familiar with it in case it ever does become more commonly used. But I think we should leave Wegener's in there for all the reasons that have discussed in favor of that.

[Beverly]

Maybe I should start a new thread with all of my ramblings. You have no idea how long it took to type that reply last night. This was the only post that I went to out of all the new ones because it just kinda jumped out at me. I just felt compelled to say something and then only said part of what was going thru my mind. I had only typed couple of lines and my mouse just slid off into my cup of chai tea :w00t:. Don, are you reaching for your coffee? Then I touched something and everything went away! So, I was able to retrieve what was saved and then continue, but it took about 4 times as long.
Yes, you are right, mouse does not work anymore, and I am so used to it and can go much faster. I'm still reaching for it...at least it wasn't my cell phone this time:tongue1:
Lisa, I made apt with new doc today - soonest is Aug 14. If they get a cancellation they will call. It will be at least 10 hr drive, so might not be able to go on a cancellation. I have not been satisfied with current doc and am looking for someone who will spend time with and keep up with what is or is not going on with me. Am trying to put together my journey so others can know and so new doctors can know everything.
Alysia, thank you! I am currently not on face book, but will let you know as soon as I am. All of my internet comes thru personal hotspot on cell phone and best for my eyes for me to read off of lap top. It slow going.
Thank you all for letting me cover everything on this thread. I know the name will not divide this group, may even just make us stronger as we continue together loving and sharing. I've been here short time, but seems as if I have known many of you for long time.
Cekmsover, I appreciate you and what you had to say. It angers me that you have this disease at all and especially so young. I cannot imagine what it would have been like for me and my family to go thru this with my children. You have been on my heart and am praying for you and your family.
Peace will reign for each of you :smile1:

[annekat]

Beverly, no need to start a thread for your ramblings, unless you want to, of course, but your ramblings are not out of line at all. Many of us have rambled quite extensively at one time or another. It's great to have you on the forum, and it is always nice to see a new person get so involved and enthusiastic in a short time. I'll be your Facebook friend, too, as soon as you join.

I also have a laptop with a mouse which I would hate to lose, as I don't like the track pad. But you can pick up a new mouse pretty cheap.
The mouse going into the tea is preferable to the tea going onto the laptop! I've had a couple of close calls there myself.

[Debbie C]

I have been reading everyones opinons on the name change.And the fact is ,it is what it is....Wegeners. I know some drs. and people call it GPA. And some don't like its origin. But that has been its name for years. It reminds me of what is going on now with the Washington Redskins because after years with that name it is now offending Indians. I am part Indian ( a small part ) but I don't care what they call it. Don't get me wrong, I'm not down playing what a horrfic thing the holocost was but changing the name isn't going to change the disease. I say we just leave it alone.

[Beverly]

Thank you Anne, I appreciate your words of encouragement. You are so right about mouse in tea better that tea on lap top :lol: Would not be a laughing matter.
Good point, Debra C
FYI everyone. My son and family are here mile down the road for daughter-in-law family reunion. Her sister has been dx with vasculitis, possibly wg/gpa. I will get to visit with her sometime this week. I am excited...know she has been thru a lot, surgeries, etc. Will give report later. See what I just did not wanting to offend anyone?

[LisaT]

I have referred to the disease as vasculitis in trying to explain it to others. Most laypersons who are healthy have never heard of the disease by either name, but there finally seems to be enough awareness of autoimmune diseases generally that if I say 'a form of vasculitis-- it's an autoimmune inflammatory disease affecting blood vessels, which means it can affect any organ or part of your body', they may have some clue what that means. Usually they don't want to know any more...

[Alysia]

I have referred to the disease as vasculitis in trying to explain it to others. Most laypersons who are healthy have never heard of the disease by either name, but there finally seems to be enough awareness of autoimmune diseases generally that if I say 'a form of vasculitis-- it's an autoimmune inflammatory disease affecting blood vessels, which means it can affect any organ or part of your body', they may have some clue what that means. Usually they don't want to know any more...
I don't explain anything. I prefer to keep my wg as much private as I can. but even if I would, the ignorance here is so big that vasculitis means nothing to the ordinairy people, not even auto-immune disease for most of them. what is more sad is the ignorance of the docs, who knows about WG mostly from medical school, if they were not sleeping at that specific lesson :rolleyes1:
btw, in Hebrew there is no way to write it as GPA. only as Wegener's Granulomatosis, which looks like a curse in Hebrew, Nazi one for sure : וגנר גרנולומטוזיס

[annekat]

Me, too, Lisa... I say vasculitis more and more. It rolls off the tongue a lot easier and has to be easier to remember. If I say autoimmune disease or condition, I may say like lupus or MS, and then they will probably know someone who has one of those, but if that person is doing OK with a well-controlled case of either, they will think what I have is not that big a deal..... whatever...... you are right that people lose interest after a few sentences. But I do think the word vasculitis is the easiest to remember if someone cares enough to look it up later. Then they will find the impressive list of the many different kinds and get a sense of the seriousness.

[andrew]

Wow reading through that was exhausting :) Excellent discussion!

I know I and many others both on this site and more than likely in many and varied places in the world still call it Wegeners Granulomatosis. It's been the name for longer than I've been alive so it's going to take a while to change. Wegeners Granulomatosis is also a well known name and in common use as a search term on the interwebs. The new GPA term is becoming more common too.

So - the URL www.wegeners-granulomatosis.com will stay as it is. However - thanks to Vdub who originally registered www.wegeners-gpa.com and then transferred it to me, this site will also soon appear under that URL as well (currently points at in motion hosting).

I'm also happy to change the graphic at the top of the page to Wegeners/GPA. Can do that this weekend.

If I changed everything all of a sudden we'd start to lose out on search results and therefore become less visible to people looking for help.

Hope that helps in some way :)

[drz]

Most of my medical records still use the term of Wegs for my diagnosis. Only the Mayo Clinic uses ANCA associated vasculitis for my diagnosis but my history states I was diagnosed with Wegs in 2010.

Here is article on back ground info for those curious about name change:

Wegener's granulomatosis?probing the untold past of the man behind the eponym (http://rheumatology.oxfordjournals.org/content/45/10/1303.full.pdf+html)

[Alysia]

I'm also happy to change the graphic at the top of the page to Wegeners/GPA. Can do that this weekend.

If I changed everything all of a sudden we'd start to lose out on search results and therefore become less visible to people looking for help.


thank you so much, Andrew :love: for taking care so well of the forum :thumbsup:
of course we don't want to become less visible.... to others and to ourselves :w00t:
said the addicted one.... :wink1: :blushing:

[chris.wg]

Looks like I got at this threat a little late. I am glad to see the course being taken. Having said that the thoughts in my head while I was reading this thread all of which made me lean for wg/gpa are as follows. NO I don't like the Nazi affiliation. But honestly so few people know what wg is much less who wegner was. Here is where it gets a bit tricky though there is a base of people who heard of wegener's even though they don't know what it is. Apparently as I don't watch a ton of TV it never registered to me. But the show house apparently quite often mentioned it as a possible diagnoses <but never was>. So with that there is a little name recognition. Having said that without looking it up on google how many people know what Amyotrophic lateral sclerosis is. What about ALS ok more common. Lou Gehrig's Disease. Bingo. I honestly don't know which name was first in that case. But I do know for some reason names stand out in peoples minds a lot easier then what sounds like random words to them. I do think including GPA or if you wish the full name will help lead people that direction. But the human mind is going to take a long time if ever to let go of the Name Wegener's for some immensely more unweildly sounding words. And changing the name outright as Andrew and others have said would lose people who need to find this site.

[vdub]

I thought maybe that URL would come in handy someday. Good deal!

It won't be an outright change. Both URLs will initially go to the place. And the homepage might change a bit to reflect the new name. Eventually one will supercede the other. Nothing will be lost.

[Geoff]

OK I am late to this discussion, but I cannot let it slip by without commenting.
First and formost I am against changing the name. It smacks to me of Political Correctness which blights our society, there is a danger we could rewrite history to blank out the bits we dont like.
I recall the joy when I was initially diagnosed after a prolonged slide towards death. It didnt matter then one iota that Wegener was a member of the Nazi party, I was just overjoyed that someone knew what I was suffering from and we could commence treatment. If he was still alive I would have bought him a drink there and then. Dont get me wrong, what went on thru WW2 was intolerable, but just because he was a member of the party doesnt necessarily make him a monster, there were good and bad on all sides.
I have visited the war graves in northern France, my great Uncle was Australian who travelled back from Canada to his home to be sent to fight in the trenches. I have seen his name on the war memorial at Villers Bretognoux and cried. Living in the UK the war was "real" and perhaps different in some respects to other parts of the world. Being European we have moved on and adapted, we still remember the fallen, witness the D-Day landing remembrance which took place recently and we still recognise the atrocities at Auschwitz and other camps.
My son has married a German woman and I have met her parents who were "fire bombed" out of Hamburg by Allied bombers, we hug and love each other, we dont hang labels around our necks and perpetuate the ills of the past.
Trying to get Awareness for this disease has become the primary objective of so many people, and changing the name just now would appear to be detrimental to my line of thinking. As someone pointed out earlier, there is a bizarre notoriety in the derivation of the disease name. We need everything we can lay our hands on to fight our corner to achieve a cure or lasting treatment.
There, I got it off my chest.

[vdub]

Have to agree with Geoff. We can't PC the entire world out of existence. And, like Andrew said, we would lose out on the current exposure we have now. It's easy enough to bounce one url address to the other and double-bang the name on the header, then be done with it. Trying to change history just won't work in anyone's favor. It appears that Andrew has already bounced wegeners-gpa to wegeners-granulomatosis -- that's the way I had it for the past couple years and seems to be good enough for now.

[LisaT]

OK I am late to this discussion, but I cannot let it slip by without commenting.
First and formost I am against changing the name. It smacks to me of Political Correctness which blights our society, there is a danger we could rewrite history to blank out the bits we dont like.
I recall the joy when I was initially diagnosed after a prolonged slide towards death. It didnt matter then one iota that Wegener was a member of the Nazi party, I was just overjoyed that someone knew what I was suffering from and we could commence treatment. If he was still alive I would have bought him a drink there and then. Dont get me wrong, what went on thru WW2 was intolerable, but just because he was a member of the party doesnt necessarily make him a monster, there were good and bad on all sides.
I have visited the war graves in northern France, my great Uncle was Australian who travelled back from Canada to his home to be sent to fight in the trenches. I have seen his name on the war memorial at Villers Bretognoux and cried. Living in the UK the war was "real" and perhaps different in some respects to other parts of the world. Being European we have moved on and adapted, we still remember the fallen, witness the D-Day landing remembrance which took place recently and we still recognise the atrocities at Auschwitz and other camps.
My son has married a German woman and I have met her parents who were "fire bombed" out of Hamburg by Allied bombers, we hug and love each other, we dont hang labels around our necks and perpetuate the ills of the past.
Trying to get Awareness for this disease has become the primary objective of so many people, and changing the name just now would appear to be detrimental to my line of thinking. As someone pointed out earlier, there is a bizarre notoriety in the derivation of the disease name. We need everything we can lay our hands on to fight our corner to achieve a cure or lasting treatment.
There, I got it off my chest.

if you feel a strong wind, it's me taking deep breaths here in Vancouver. :bored: I get why you want to use the old name, and as I've said before, I'm fine to continue with what the group has decided. (Although technically, the name for the disease itself has already changed whether we agree or not; the medical community decided this and we're just deciding whether to follow that new name on the forum or stick with the old..)

With respect to moving on and political correctness, I cannot hold my tongue... There is a big difference between being one of the countries involved in a war, and being a race targeted for genocide. The Jews, (and gays, gypsys and I'm sure other groups murdered by nazis) won't and can't 'move on'. It is a huge and important part of our history. I don't see it as political correctness to divest a nazi of honours he achieved while acting for and as a part of the genocide machine/regime, and I wouldn't be buying him a drink any time soon were he to come back to life and try to take credit for my diagnosis. He's likely not even responsible for discovering/describing the disease in any event. If you read the academic paper someone linked to above, you'll find that he added further description or details to someone else's work....

To be clear, it is not about a grudge against Germany itself or even descendants of the nazis, who hold no personal guilt (although I'm sure it's difficult for them, as they feel guilty for what their parents and grandparents did). He was not an uninvolved bystander or a present-day German. If we held it against all Germans we'd be perpetuating racism ourselves. No one here is hanging labels around necks or perpetuating ills of the past. That's a mischaracterization of the issue and of a rational objection to using the name.

I will try to stop now. As an aside, my husband's mom is German which makes him German at least in part (aside from the fact that he's adopted). That's completely irrelevant to wegener and the Nazis and I obviously don't hold it against him or them... I made babies with him. :lol::lol:

[LisaT]

There was no 'good and bad on all sides' w.r.t. The Nazis. Civilian Germans, and soldiers conscripted into the army, yes. Nazis by choice, no good. and yes, it does make someone a monster. Now I'll be quiet.

[vdub]

Please don't let this become an issue. Both urls now go to the same place. You can use either one you want. It will be a long, long time before Wegener's is eliminated from the world's English lexicon and, if we are to serve the GPA community, then we need to strike a balance between what might be offensive and what people will be googling if they are to find us.

By putting both url's to use and going to the location, I believe Andrew has struck that balance. Also, that and changing the site heading to "Wegener's/GPA".

I can see where this could become a very highly charged discussion and people could potentially say things they later regret, so I am closing the thread. You can PM me if you like.