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

[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

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.

[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


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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.