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kdbabie
11-19-2009, 01:43 AM
Hi everyone and I hope you are all doing well.

I'll tell you a little bit about my story. My Mum was diagnosed with WG earlier this year, and has just been a horrible time for her and all our family. We live in Brighton, UK. After seeing my Mum suffer so much, I knew she needed more support than me and the rest of my family could give her. She really needed to talk to someone else with WG that could relate to what she was going through. So I started researching any support groups that were available in the Sussex area, after a long time, the nearest support group I could find for my Mum was in Surrey. Which was way too far for her to travel whilst feeling as ill as she did.

So I am wanting to set up a support group to help not just my Mum but for all WG sufferers in Sussex. To just know that someone is there on the other end of the phone or pop in for a cup of tea, I think will really help all those sufferers that are lost and feeling frightened by it all. It's a huge emotional turmoil and life changing thing that happens, and really feel that WG patients need to be supported through this.
So I have set up a page on Facebook
Login | Facebook (http://www.facebook.com/home.php?#/group.php?gid=204817566801)
For anyone that is interested in joining or helping to arrange the meetings.

I look forward to hearing from anyone that is interested.

Thank you and I wish you all well.
Kerry

Sangye
11-19-2009, 05:37 AM
Hi Kerry,
How sweet of you to consider your mom's needs like that. Yes, Weggies really need support from others who are going through the same thing. It's great if she can find others to meet with in person.

But if not--or if it's not enough-- please let her know about our group. Even though we're online, we get to know each other pretty well. She'll always find comfort, acceptance, guidance, advice and a place to vent if she needs. Because we have members from around the world (and because our sleep schedules are messed up from the drugs) there's usually someone online at any hour! :D

All the best to you both. :)

Sangye
11-19-2009, 05:52 AM
And we post things like this to cheer each other up :

http://icanhascheezburger.wordpress.com/files/2009/11/funny-pictures-kitten-has-friends.jpg (http://www.wegeners-granulomatosis.com/forum/%3Ca%20href=)

(http://icanhascheezburger.com/)

Doug
11-19-2009, 10:48 AM
I can only add to Sangye's comments: when no one's around to chat about this disease we have, it's nice to have this forum because we are spread out all over the world. 24-7 service is available, and we have had a broad range of experiences. If we can't enjoy a spot of tea with your Mom, we can share our enjoyment of a spot of tean over the internet with your Mom!

jola57
11-23-2009, 07:31 AM
Well put Doug, no matter where I am in the world I know that my friends are only a click away.;):D

jola57
11-23-2009, 07:33 AM
Thanks Sangye, I realy needed a funny pic today:D