I hate stories like this

[pberggren1]

Whenever I go back and read stories like yours Sangye it makes me cry. I can certainly understand your PTSD. I am just glad that you have Dr Seo now and we have you.

[Sangye]

Thanks, Phil!

[mishb]

Huh, I was supposed to be dead 25 years ago and didn't know it? Why don't people tell me these things? I can't be expected to die on time if I'm not informed.
But seriously, so great you got ahold of him. What abysmal information in this day and age. A blind nurse with a one eyed dog could have googled better info than that.

I'm glad you didn't die 25 years ago, or we wouldn't be able to wish you a very Happy Birthday today.
I hope you have a fantastic, pain free, day

[me2]

It was a great day. I did some tree pruning at my mom's. Ate lobster and fruit torte. I don' know how you knew it was birthday time but thanks for the wishes.
(Of course I'll pay for all this tomorrow. )
Thanks Michelle

[Geoff]

Arriving late to the party as I have been unable to log on for seemingly months, but going back to the original story, it became apparent after contact with Vasculitis UK that the 'journalists' pretty much padded the story out after googling Wegs. The family were understandibly annoyed at the innacuracy of the story.
This was, however, the first report I have seen about a Wegs patient, featured in a National Newspaper. This coming so soon after Rare Disease Day and the coverage given to AI disease has given me hope for the future.
At a recent Vasculitis Support Group meeting, it was encouraging to hear from a senior member of the Addenbrookes team about the increasing amount of research and investment from drug companies etc.
Like everyone else here, I hope that the young man has been given the right support and also the various addresses of good forums like this one.

[annekat]

Well, that is interesting! When I first saw the story, I was shocked, and then it occurred to me it could be bad journalism, that the press could have embellished the story and given wrong statistics. I thought of saying that on here at the time, but didn't. I guess I'm not too surprised to find out I was right all along. I would be pretty annoyed and upset, too, if I were the young man or a member of his family. Best wishes to him, and I'd love to hear from him here on the forum.