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Thread: "I Don't Know" - Notes from the VF Symposium

  1. #31
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    The Vasculitis Foundation and NIH will be posting or linking to the videos recorded at most of the sessions. It won't provide the benefits of being there and getting to talk to the specialists after the sessions, etc., but it will give those who couldn't attend a lot of the information we received.

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    Quote Originally Posted by Tulip View Post
    The Vasculitis Foundation and NIH will be posting or linking to the videos recorded at most of the sessions. It won't provide the benefits of being there and getting to talk to the specialists after the sessions, etc., but it will give those who couldn't attend a lot of the information we received.

    That will be great thanks tulip. Looking forward to them.
    Chocolate bar for the first member to spot our JanW
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    Heh. Since I was the only black female patient there, and the only one with a saddle nose, that would be like shooting fish in a barrel!

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    I wonder why more Caucasians get wegeners instead of African Americans? I keep seeing how rare it is?

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    Not as rare as we think, elephant. Another myth debunked at the symposium...it is diagnosed in all races, although it slight favors European whites. I'm sure the difference is in how rarely it is being diagnosed, particularly since no docs think that blacks and Asians can even get it! I saw all races represented at the conference.

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    Wow, and the literature that I read on the Internet is different. Glad you got to hear and see it first hand. I guess we all have alot to learn from the disease.

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    Quote Originally Posted by JanW View Post
    Heh. Since I was the only black female patient there, and the only one with a saddle nose, that would be like shooting fish in a barrel!
    Good clues there JanW. lol. How many people there then? In my mind I expected 100s if not 1000s of people.
    Behind every great man is a woman rolling her eyes.
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    I think 350 and many of them were parents/caregivers or people with other vasculitides. There are 15 diseases under the VF umbrella. When you see everyone in a room you realize how blindingly rare these diseases are.

  9. #39
    Doug Guest

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    I know you didn't go for the glory, so I hope you don't mind yet another hearty "thanks!", as many hugs as I can give over the internet before Andrew's website cuts me off (five, isn't it? ~ we'll see >hug< >hug< >hug< >hug< >hug< >hug<), and a "well done". Not only are your reports informative and encouraging, they are written clearly, well, and in great detail. You could have been a journalist!

    The news that you don't have to be Northern European stock to be eligible for initiation into the WG club isn't good news, yet it is similar to what ornithologists note about birds: don't be surprised when a "rare" bird shows up in your backyard ~ because birds don't look at distribution maps to see where they should be, ornithologists and birders/twitchers do. Similarly, records show more migration occurs on the weekends and holidays ~ because more birders are out then watching for migrating birds then than during the weekday! More doctors and researchers on WG issues live in areas predominantly populated with Northern European stock, so, hey, mostly whites get WG!

    Jan's reports start to show what everyone should understand by now, there is just one race, the human race.
    Last edited by Doug; 08-07-2010 at 12:51 AM.

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    Well put Doug.

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