Eastern USA?

[allyislovexx]

Wondering if there are any Wegs patients in my area. Seems to be a pretty rare disease, one demographic shows only 13 hispanic people with it diagnosed last year!!

You live in northern NJ right? I'm from northern NJ too, Sussex County. What county do you live in?

[lbrant]

I am looking for anyone in the Pennsylvania area who has WG. My mom is newly diagnosed and I think if she could talk to someone it would help greatly

[Sangye]

Hi lbrant,
There's at least one other person on here from Penn. Meanwhile, please tell your mom we'd love to have her join the group here!

How is she doing? Does she have a Wegs specialist?

[Doug]

It pleases me greatly to see so many people trying to meet up! You will be blessed to meet another Weggie! At least I was. Don't know about Lisa Coffeelover! Good job, everyone, and may your paths cross! How about a three or four weggie meet up?

[Sangye]

There goes Doug, playing with fire again.

[coffeelover]

I am in and yes Doug...I too felt blessed to be able to meet in real time another WEGGIE
Lisa

[Doug]

I am in and yes Doug...I too felt blessed to be able to meet in real time another WEGGIE
Lisa

It is unimaginable, a totally unreal experience akin to running a sub-four-minute mile. I'm excited for our friends on the East Coast!

[sumsum5587]

im in Greenville South Carolina.... i'm going to wight my story as soon as i fugure out how..lol

[lbrant]

I will try to get her to join. She is still adjusting to the meds and has been having difficulty with walking up stairs and since it is in her lung she is short of breathe. She is currently on the prednisone and a cancer drug that starts with a C and she is also on bactrium. She does have a WG specialist who is a rhuematologist and her G.P. is keeping close tabs on her , as she is the first patient he has ever had. The good thing is that they caught it when she was in the hoptital for what they thought was just dehydration from sinusitis and then the round of x-rays and tests finally told them that she may actually have WG .. They sent the blood off to Hershey and Geisngers and had it confirmed. She just got fitted for hearing aids and now can hear much better. I think the hardest part is that she was such an independant person and this came on at the same time that my dad was being treated for throat cancer ..

[crackers]

the next thing will be weggie summer camp.
john.