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Thread: Wegener's Granulomatosis Studies

  1. #21
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    I would tend to trust the top experts you talked with, Phil, but still don't know how they arrived at that number. I do understand that it is more common in certain geographical areas. My unscientific conclusion, which I'm sure many of us have reached, is that there are a lot more Weggies than can be scientifically documented, due to the new cases every day that haven't yet been counted, and even more due to what I assume to be hundreds of thousands, and perhaps more, undiagnosed cases.
    Anne, dx'ed April 2011

  2. #22
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    I discussed the numbers with my new doc and she agrees that it is more like 1 in 5,000, at least in North America and Europe. She has 20 cases of Weggies herself.
    Phil Berggren, dx 2003

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    In my opinion I think that WG is not as rare as what the statistics tell us. Yes we have to go by it because that is supposedly the ratio that has been treated, But in my son's case, where the disease moved so quickly and he died within two months of showing symptoms, how many other people have also died without been diagnosed properly and a lot of people are not as persistant as I was to know what was wrong with Brandon. Yes these AI conditions are not as common as Cancer and so on, but in its own right I think it is becoming more common than what we think. Not to mention some of the countries in Africa, that don't have modern medicines and technology to diagnose properly. I also find it so hard to believe that with all the medical technology today and no one has found the exact cause of WG. We are living in the 21st Century not the dark ages!!!!!!!!

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    Quote Originally Posted by pberggren1 View Post
    I have talked with the top Wegs docs in the US and Canada and UK and they all say it is more like 1 in 5,000. In Saskatchewan there are about 200 Weggies and in Alberta there are about 700.

    That does it - I'm never coming to visit Canada

    Oh wait ........it's too late for me, I should just fit in perfectly
    Keep Smiling
    Michelle


    Live your life in a way that you wouldn't be ashamed to sell the family parrot to the town gossip - WILL ROGERS

  5. #25
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    I told ya...Phil attracts Weggies!
    Knowing how to think empowers you far beyond those who only know what to think. -NdT


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    Actually, this thread started out saying that some studies are showing that the banner line of the Vasculitis Foundation information on GPA is incorrect. That is that there is no evidence that it is hereditary. My three sons are more comfortable believing that their mothers condition is hers alone. I wish there was more work on finding a cause, such as it is more common in nurses who have sand blasted spoke wheels on a Model A Ford or sum such.

  7. #27
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    It's a Model T.....get it right DJS.....lol.
    Phil Berggren, dx 2003

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    I think the numbers are different in different countries.
    when I was dx I was told the statistics is 1 to 100,000.
    In my area, which includes cluster of small cities and bigger city, about 300,000 citizens together, most of the docs didnt see any weggie but me. I never met one in Israel. (Im meeting you) In searching forums of AI in israel I found about 3 weggies writing in the past 10 years.
    lately I finally found ENT doc in the biggest city in the country that prob is the most experienced about WG in Israel.he is working in an area of 3,000,000 and he was proud to tell me that he met 10 weggies and some others with unclear diagnosis (I'm going to meet him next week).
    Alysia
    dx 2008


    Here, in this forum, I have found my sweet eternal love, my beautiful Phil.. :
    https://www.wegeners-granulomatosis.com/forum/threads/4238-pberggren-memorial-thread
    "You are my sunshine", he used to sing to me... "you make me happy, when skies are grey" I still answer him.
    Rest in Peace, my brave Batman and take care of your weggies from heaven, until we meet again.

  9. #29
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    Great discussion! I find this fascinating. There's still so little known about it, no-one has the full picture yet.

    From what I can gather, Wegener's Disease is less common in non-caucasians, but I do wonder how many cases go unreported in less developed areas of the world. It's frightening to think that people might be dying from this disease without having it diagnosed, never mind receiving any treatment. The 500 figure I quoted is the number of people diagnosed in the UK per year. I suppose it's possible that there will even be people in the UK who aren't diagnosed. The population of the UK is just over 63 million so 500 per year works out at about 1 in 125,000. If we extrapolate that out to the world population of 7 billion that would give us around 56,000 sufferers diagnosed per year.

    If we used the figures you have Phil, there would be almost 1.5 million people with Wegener's worldwide. It doesn't sound like an obscure, rare disease when you think about it like that!

  10. #30
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    That's true Barry but let's look at something else. How many of us know a person with cochlear implants? That is about 1 in 5,000.
    Phil Berggren, dx 2003

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