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Hi Jim!

I have been trying to find you for a long time
Me too! What happened to the Invision board, it stopped working and I lost you all? :(

I will take time to look at the link you have provided Jim, good to hear from you again. I hope you have been doing ok? I have been better but still hanging in, winter here in Australia is kinder to me but still having lots of ups and downs :(

love
Lily
 

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Discussion Starter · #3 ·
Hi Lily

Great to hear from you again.
I was trying to figure out a way to get ahold of you and I forgot about this message
board.
They did not renew the cnsv message board, which kind of upset me.
They could of given me the option to take it over. But it was not offered.
Shortly after that I resigned from the cnsv foundation.(long story)
Now I am a patient advocate for the Vasculitis Foundation.http://www.vasculitisfoundation.org/
Please keep in touch.
You can email me at [email protected]

Jim
 

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:( on the CNSV message board, it was a great source of comfort and info for everyone! Seems silly not to have given you the option of taking it over :mad:

I will keep in touch Jim and it was good to hear from you also :bigsmile:
Keep up the good work, you helped me immensely so I am sure you will make a great patient advocate!

love
Lily
 

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hi im bridie ive had lupus 30 years but just getting to know about it since having the computer the doctors say because ive had it so long its just normal to me..they are not wrong.i also have vasculitis but dont know much about it..could someone explain it to me..hope you are all keeping well as to be expected..bridie
 

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Hi Bridie :)

I think from what you said in another post you have Vasculitis of the skin is that correct? It's a common problem in many lupies (about 70% one source quoted). It's basically inflammation of the tiny blood vessels closest to the skin. It generally doesn't cause too many problems as it doesn't damage any organs and isn't life threatening like Vasculitis affecting the brain or other major organs supplied with blood vessels.

love
Lily
 
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