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

[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)

I don't want us to fight over the name 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 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.