skype video - weggies from Spain, Italy, Norway, South America, or Japan

[Alysia]

Hi,
Ed Becker on facebook published this one, and allowed me to share it here:

Busy behind the scenes, doing SKYPE video interviews with patients all over the world, for the upcoming May Vasculitis Awareness Month.

We are showcasting the global reach of the VF and how the organization can reach anyone..virtually anywhere in the world.

QUESTION: Is there anyone here who lives in the following countries and would be open to doing a SKYPE Video interview--talking about your experience with vasculitis.

Specifically we'd like to talk with patients in: Spain, Italy, Norway, South America, or Japan. Of course, we're happy to talk with patients anywhere!

All you need is a webcam/laptop with camera, a SKYPE account, and just a desire to share your story about living with vascultiis.

If so, please contact me by April 2.

Thanks much!
Ed Becker Producer, Extraordinary Vasculitis Stories,
Vasculitis Foundation

Ed's facebook page is: https://www.facebook.com/ed.becker.79?hc_location=timeline

I think that it is possible to contact him through the vasculitis foundation too.
or ask me to contact him for you.

I also give him the link to this post.

I wonder if we have someone from Japan....
btw - he wrote "anywhere", so, some of our stars, it is your time :wink1:

[Alysia]

I just wanted to say that the VF does not yet reached Israel .... :-(

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[drz]

I just wanted to say that the VF does not yet reached Israel .... :-(

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Volunteer to talk with them and let them know. I think you could still join and get their newsletter and emails.

[pberggren1]

But I reached Israel.......:love:

[Alysia]

But I reached Israel.......:love:
awww thanks :blushing: :wub: :hug1: Dr. Phil is def better then the VF :wink1:

[Alysia]

btw - he wrote "anywhere", so, some of our stars, it is your time :wink1:

Phil, I was relating to you.... waiting to see you on the screen :cool1:

[mishb]

I was only thinking the other day, that there doesn't seem to be anyone from Japan or China.
These must be the Countries to live :biggrin1:

[Dirty Don]

I was only thinking the other day, that there doesn't seem to be anyone from Japan or China.
These must be the Countries to live :biggrin1:

Keyboards are different...duh! Ducks yet once again...this time I DO have coffee!! Toooooo early!

[Alysia]

I was only thinking the other day, that there doesn't seem to be anyone from Japan or China.
These must be the Countries to live :biggrin1:

look at this link : Renal vasculitis in Japan and the UK... [Nephrol Dial Transplant. 2008] - PubMed - NCBI (http://www.ncbi.nlm.nih.gov/pubmed/18565978?dopt=Abstract)
bottome line: No patients with cANCA/PR3 were seen in Japan. Wegener's granumolatosis seems to be much less common in Japan than the UK.
I think that the one who wrote this article is Geoff's doc.

[Wegetarian]

No patients with cANCA/PR3 were seen in Japan. Wegener's granumolatosis seems to be much less common in Japan than the UK.

Why does the Vasculitis Foundation want to have specifically Wegs from Japan? I mean I wonder why not any vasculite would do? I bet you'd hve better luck finding someone with Kawasaki-vasculitis :)

[vdub]

Why does the Vasculitis Foundation want to have specifically Wegs from Japan?
I believe they were trying to show the global impact of the disease and Japan was one of the countries where they haven't been able to contact anyone with Wegeners.

I bet you'd hve better luck finding someone with Kawasaki-vasculitis
Interesting that you should mention that. The answer is "yes" and San Diego, too. I saw this theory of incidence in wikipedia.... "Other data show a clear correlation between Kawasaki disease and tropospheric wind patterns; winds blowing from central Asia correlate with Kawasaki disease cases in Japan, Hawaii and San Diego."

I have never seen any environmental correlation for Wegener's. However, our map (https://www.zeemaps.com/map?group=242717), which is nothing more than a pin-point for forum members, does have a higher incidence in US, CA, GB, NZ and AU. I always thought that was probably because our forum is in English and these are all English-speaking countries. I'm not sure there is another Wegener's forum anywhere else in the world, but I have no idea.

[Wegetarian]

Well the post Alysia quoted didn't mention Wegener's, just vasculitis. So was wondering if they still wanted just Weggies?



I have never seen any environmental correlation for Wegener's.


well there seems to be a georaphical border for Weg and MPA, remember seeing this article that had maps which showed the prevalence of one disease over the other and that we had more wegs in the northern and southern hemispheres.



I'm not sure there is another Wegener's forum anywhere else in the world, but I have no idea.


Here are some links to other Weg forums:

Wegener's Granulomatosis. Forum discussing Wegener's Granulomatosis at Patient.co.uk (http://www.patient.co.uk/forums/discuss/browse/wegener-s-granulomatosis-2455)

This one says we are the most active one, but has some links to other resources and another forum:
Wegener's Granulomatosis Forums (http://www.wegenersdisease.org/wegeners_forums.html)

Wegener's Granulomatosis Forums (http://www.mdjunction.com/forums/wegeners-granulomatosis-discussions)


So this isn't the only forum, but it is the best one ;)

[vdub]

and that we had more wegs in the northern and southern hemispheres
Maybe they have more mpa in the western and eastern hemispheres.... :-)