Wegener's Article (rare disease day)

[carriej22]

lol thanks guys. I never thought myself pretty until I got wegs. Then I realized how pretty I WAS now that I am so homely lol

[annekat]

I feel for you, Carrie, losing some of your beauty due to Wegs. But I think you will get it back someday! And your face will always be as radiant as it is in all the pictures I've seen.

[drz]

Carrie, that is so awesome! You ARE a great writer. I cannot believe the insensitivity of the "chicken soup" woman. I went in there and put a thumbs down on her comment and thumbs up on all the positive comments, including your mother's, that appeared after it. I bookmarked your article and think it should be saved in some sort of archive along with Marta's radio interview, Phil's campaign to keep his doctor in town, and other such accomplishments by members of our forum. Of course, the forum is it's own archive, but it would be nice to see these things together in one place for easiest access, and they need to be shared with our communities at large, not just on the forum. Someday maybe it will be COOL to know everything possible about rare diseases! I think kids should be taught a lot more about them, and diseases in general, in school.

Great idea. Maybe there is a way to add a new group to the forum and transfer those messages like a heading for publicity relations info or even stating a new thread and copying those messages into it.

[HopeinTN]

Great job Carrie! I posted to the article. Shame on Joy!

My Post:
Joy- Carrie can no more stop having this disease than you could stop being ignorant. Surely you are just some kid that is trying to get a rise out of everyone. I can't imagine that another adult would be so stupid. I too have Wegener's and I would give up all my cherished possessions to be able to stop having it, just for one day. How about you hang out with Carrie for 1 day and see what she goes thru. Then again, never mind, some people just don't get it and we already suffer enough in private and prefer not to waste precious time with ignorant jokers. Good day and thank you for your time. Hang in there Carrie, you aren't alone.