wiki wegs

[vdub]

Do the pictures of the saddle nose on the wiki page bother anyone but me? I know some of us have a saddle nose and some have extreme saddle nose, but this seems a little out of the norm. I can see where people who are diagnosed with the disease get quite upset if this is the first thing they see when they start researching the disease.
Granulomatosis with polyangiitis - Wikipedia, the free encyclopedia (http://en.wikipedia.org/wiki/Granulomatosis_with_polyangiitis)

[Debbie C]

That whole site is bothersome to me. That is nothing but gloom and doom :(

[annekat]

Do the pictures of the saddle nose on the wiki page bother anyone but me? I know some of us have a saddle nose and some have extreme saddle nose, but this seems a little out of the norm. I can see where people who are diagnosed with the disease get quite upset if this is the first thing they see when they start researching the disease.
Granulomatosis with polyangiitis - Wikipedia, the free encyclopedia (http://en.wikipedia.org/wiki/Granulomatosis_with_polyangiitis) Yes, I think those pics represent too extreme an example of saddle nose to be used alone without also showing the more common ones. Mine is not nearly that bad, nor are those of Phil and Alysia and any others I can recall seeing on here. I can recall one that was more extreme, and she had it fixed, but even it was not as extreme as these pics. I would find this pretty distressing if a new Weggie looking for info. I understand that with Wikipedia, people may add or change things on there? But I don't know how that works.

Deb, I didn't take time to read the whole article, but I agree about the gloom and doom. They used the old 80% 5-year survivability bit, which makes it sound like once the five years are up, that's it for those of us who've survived that long. We know that isn't true. Also there was a picture of an eye that was pretty creepy. That is not to disregard people who have had these extreme symptoms and worse. But it gives an overly discouraging view to anyone new.

[vdub]

I will look into changing and updating the article. I've edited other wiki articles, so I already have an account. It will be a while, though. I have to get some energy back.

[Debbie C]

Besides that you have a car to get in order and get ready for your walk !!

[annekat]

I will look into changing and updating the article. I've edited other wiki articles, so I already have an account. It will be a while, though. I have to get some energy back. No rush, vdub! It will just be cool to know that you did it, once you can find the time and energy. For now, just take care of you.

[vdub]

I finally put a call into my rheumy. I'll bet he comes back and tells me to 1) make an appt and 2) increase my pred. I'm guessing 15mg. I'm on 5mg now. I know that would mean extra weight gain, but I would sure welcome the burst of energy.

[Jaypfei]

Yes, the pics are scary, especially if you are newly dx'd and looking for information online. My saddle nose isn't nearly that bad. I'm going to presume all the pics are worse case scenario if not Dx'd and treated early.
That's great Vdub that you will be able to amend the article.

[annekat]

Yes, the pics are scary, especially if you are newly dx'd and looking for information online. My saddle nose isn't nearly that bad. I'm going to presume all the pics are worse case scenario if not Dx'd and treated early.
That's great Vdub that you will be able to amend the article. I think maybe with saddle noses, a lot depends on the original shape of your nose and its inner anatomy. I can't explain the differences. But my saddle nose happened right around the time of dx, and never got any worse, even though there was subsequent total destruction of my septum and other features of my nasal cavity, over a period of time, even with treatment. My exterior nose stayed the same, and is a lot like yours, Jolinda. I figure it fell as far as it could, once it lost the support of the cartilage. I know this may not be true of everyone, some people's may get worse. And I'm pretty sure I could have avoided it altogether if I'd been dx'ed and treated a couple of years earlier.

[vdub]

I will use the pictures of the saddle nose from this study if I can get permission from the author....
Progressive dyspnoea following the treatment of Mycobacterium absce... - PubMed - NCBI (http://www.ncbi.nlm.nih.gov/pubmed/22947057)

[annekat]

I will use the pictures of the saddle nose from this study if I can get permission from the author....
Progressive dyspnoea following the treatment of Mycobacterium absce... - PubMed - NCBI (http://www.ncbi.nlm.nih.gov/pubmed/22947057) Hey, we know that guy..... His was a lot like mine, looks a lot worse from the side than from the front. The side view here doesn't show it as well as it could. There's another pic I've seen a lot that works well... if I can find it I'll forward it to you, though you've probably seen it, as it comes up in Google searches.

[vdub]

Yes, we might know the person.... :-) Being in wikipedia might be a fitting tribute. I have written to the hospital where the author works to see if they will give me his e-m address. However, I think once something is published on a .gov site, it is considered public domain, but I don't know that for certain.

[Alysia]

I will use the pictures of the saddle nose from this study if I can get permission from the author....
Progressive dyspnoea following the treatment of Mycobacterium absce... - PubMed - NCBI (http://www.ncbi.nlm.nih.gov/pubmed/22947057)

please don't :crying: sorry.
we should have ask Phil's permission, not the author's permission.

[Alysia]

Yes, we might know the person.... :-) Being in wikipedia might be a fitting tribute. I have written to the hospital where the author works to see if they will give me his e-m address. However, I think once something is published on a .gov site, it is considered public domain, but I don't know that for certain.

I don't feel that being on wikipedia is a fitting tribute. I am sorry.
you will not find the author. dr. Tagboto disapeared after he left swift current. Phil sent him couple of mails and didn't get any answer. I also tried to find him many times for Phil. especially on his last weeks and couldn't find him.

[Alysia]

fitting tribute to my sweet Phil is not something which need to be public. it is something of the heart. of the soul. something that feels close and known, something of our weggie family.

[vdub]

OK, I won't use those. I'm sure I can find others....

Maybe someone on the forum could donate some pictures....

[Alysia]

OK, I won't use those. I'm sure I can find others....

Maybe someone on the forum could donate some pictures....

thank you.

[annekat]

I might let you use a picture of mine, if it was not too easy to identify who I am.... trouble is, there is usually no one here to take a picture. I've seen other good ones on the web that are commonly used.... I'll look for the one one I had in mind, which I think didn't show the person's whole face, and you can try to see whether posting it would be a problem.

[LisaT]

I too searched everywhere for Dr. tagboto. So disappointing that he was nowhere to be found when Phil needed him... :crying::crying::crying::crying:

[SpaceflightAddict]

Hey vdub, I know my doc at Hopkins has a couple of pictures of my nose that she used in a class. I will get in touch and see if I can get a copy to publish online.

[vdub]

That would be great! Please see what you can do... Thank you very much! I have pics from a couple other studies, but I'm being ignored. The medical community is really scared of hipaa issues (as they should be)....

[SpaceflightAddict]

Hey vdub, sorry it took so long to get this for you. Life kinda got busy.

I got the picture from my doc, and it is not as good as I remember, but it does show a pretty clear saddle nose.

http://i.imgur.com/yClxHvr.jpg

If you still want to use it for the Wegener's wiki page, let me know and I can email you the original. I own all of the rights to this image, and I am totally fine with it being on wikipedia.

[annekat]

That is quite a bit different than mine.... I'm sure it depends a lot on the original shape of one's nose. Good one, though!

[SpaceflightAddict]

Mine does not look as bad now as it did when I was first diagnosed. Some of the prednisone chub ended up in my face and hides it a bit.

[annekat]

I depend on my glasses to hide mine. I had to take them off for my new drivers license picture, their new policy. I was mortified. They probably thought I was a cocaine addict and any cop that pulls me over may think the same. Not that I ever get pulled over, though.

[vdub]

That looks good! I may need some details that the pic is in public domain, but I need to look into it further. I will see what needs to be done. Thanks for getting the pic. It will be a great improvement over what they have now.

[Jayne 14]

I hate my saddle nose , but since treatment it's definitely getting better
The images on that page are terrifying !!!
Love that you want to change it


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[annekat]

I hate my saddle nose , but since treatment it's definitely getting better
The images on that page are terrifying !!!
Love that you want to change it


Sent from my iPad using Tapatalk I don't understand how it gets better, unless it isn't a complete collapse of the nasal bridge.... and even then, I don't think cartilage can grow back, can it? .... but if yours is getting better, I'm happy for you. Every case is different, I'm sure. Mine has fallen as far as it can and won't get any worse, I don't think. I know it's not nearly as bad as some I've seen pics of. I'd better check that wiki page.

[annekat]

Just looked at the page.... yikes! I think that person has a flatter nose to begin with..... jeez, I feel sorry for her. Yes, a more moderate one would be more appropriate to show.

[Alysia]

when I told my beautiful Phil that I am sad about my saddle nose, he told me that if someone asked about his, he said that he had a fight, and that: "you should see the other guy's nose"...

I am not sad about it anymore. I am honored to have same "feature" as my beautiful soulmate. I like it that we look similar, not only in our souls but also in our faces... and we are cute with our saddle noses together. pictures in my profile. PLEASE, DO NOT SHARE OUTSIDE, VDUB. thanks.

[Jayne 14]

Annekat
When I said better I meant my nose actually works a bit now
I can smell a bit now & then & actually breathe through it : before treatment I was a total mouth breather
It's still odd looking but I have swelling on either side of both sides sometimes this is down more : depending on a slug being due to evacuate !!!
I love the fact summers nearly here . Nose looks way better in sun glasses !!!


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[annekat]

Annekat
When I said better I meant my nose actually works a bit now
I can smell a bit now & then & actually breathe through it : before treatment I was a total mouth breather
It's still odd looking but I have swelling on either side of both sides sometimes this is down more : depending on a slug being due to evacuate !!!
I love the fact summers nearly here . Nose looks way better in sun glasses !!!


Sent from my iPad using Tapatalk Oh, thanks for the explanation! In spite of my saddle nose, I've been able to breathe through it pretty well as long as it wasn't full of 'slugs'. Every nose is a little different, I guess. I also have the non-smelling problem but once in awhile I'm pretty sure I catch a whiff of something. It's always when I'm not trying, and then I can't capture it again! As for glasses, I don't know what I'd do without mine, probably get fake ones or wear sunglasses a lot, as you do! I can handle people seeing my nose from the front, but from the side, it looks absolutely dreadful. I've actually looked online for some kind of putty or fake nose bridge that one could use to disguise it. There were some results that weren't entirely satisfactory.... will share if I attempt it again.

[vdub]

I have been remiss on getting this done, which means I'm feeling really well and doing a lot of projects. I will get back to this and make the change, but it might be a while. Its summer here, so outdoor activities are the priority.

[vdub]

It's been almost a year since I promised to do this, but I was totally remiss. Thanks to SpaceFlightAddict, I got a picture and made a change for the saddle nose picture. I also added our site as a "Popular support site" in the "See Also" section.

I don't like the eye picture, but I'm a little hesitant to remove it. Does anyone have an opinion about that? Also, are there any other changes that should be made -- I'm not talking wholesale changes, but just minor things for clarification. I'll take any suggestions, but don't be offended if I don't make the change.

You can see the changes here:
https://en.wikipedia.org/wiki/Granulomatosis_with_polyangiitis

[SpaceflightAddict]

If it were me, I would leave the eye thing alone. I am not sure there will be anything to replace it with that is more relevant.

I have some damage to my left eye from Wegener's, but it is not at all the same as the kind in that picture. It seems to be one of those "variable" symptoms we have.

[vdub]

Maybe change the wording to "Occasional eye damage due to wegs" or something of that nature, but probably not a big deal.

When I was dx'ed, the first thing I did was go to the internet. Of course, as seems to happen to me, I ran into the worst of the worst articles for prognosis. One said I only 8 years left and another said I would be lucky to get to 5. I've gone past 5 and I'm confident I'll go past 10 or 15, too, even with all the pit issues. So I want to take the "instant scariness" out of the some of it. Wiki is one that can be changed. On the other hand, we don't want to take too much scariness out of it, since it is a very serious situation needing a lot of attention. I'll leave it alone.

Thanks very much for your picture!

[LCL2013]

Actually, the saddle nose pic didn't bother me nearly as much as the pic and image of the eye. Started crying when I saw that, especially after having gone through so much involving my left eye from my shingles episode.

[Debbie C]

I think it looks good vdub. The eye thing is scary now !!!

[annekat]

My thought on the saddle nose is that it has a different appearance than a lot of ours, as it really depends on the original shape of one's nose. Many of us have one that is more turned up at the tip, in some cases almost resembling a "pig nose". But this is definitely a saddle nose and does serve the purpose of replacing the very extreme example that was shown before. Thanks, vdub.

The eye is a little disturbing but I don't know enough about eye involvement to know how typical it is. I have no real problem with leaving it, unless someone can come up with one that is a little less extreme. My two cents worth.

[drz]

My scleritis showed more red than the pix listed and there might be some better ones to also add but some cases might be more minimal like the one shown and it would be bad idea to give an indication that all cases are identical. I think the pix is a rather poor one and it might be possible to find some better quality ones.