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    Default wiki wegs

    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

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    That whole site is bothersome to me. That is nothing but gloom and doom
    Life isn't about how you survive the storm, but how to dance in the rain !

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    Quote Originally Posted by vdub View Post
    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.
    Anne, dx'ed April 2011

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    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.

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    Besides that you have a car to get in order and get ready for your walk !!
    Life isn't about how you survive the storm, but how to dance in the rain !

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    Quote Originally Posted by vdub View Post
    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.
    Anne, dx'ed April 2011

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    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.

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    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.

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    Quote Originally Posted by Jaypfei View Post
    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.
    Anne, dx'ed April 2011

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    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

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