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I hate stories like this
This poor guy thought he was all alone with WG, and thought he would be dead by the time he was 30
Luckily, I've got family that live in the same area as him, so they sent me the link and I managed to get in touch with his sister, and hopefully reassure them a little.
Life changed by rare disease - News - North Devon Gazette
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I read this article last week in a online British national newspaper. I was disturbed by a few things in the article especially the fact that it was stated that he was not likely to live over the age of 30. So glad you were able to contact him and I am sure you would have told him about this website.
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Hi Rose
I've got my own website, which focuses on UK based resources, but also pointed them here. Hopefully between us all we can help them out
Registered Member
OMG Who told him he has a 1-in-5 chance of living beyond age 30??!! Poor guy, to have gotten such stupid input.
I'm glad you've befriended him Tippon. I hope he'll join our group. Who knows what other crazy stuff he's been told.
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That's the sort of information that's online, unfortunately
When I was diagnosed, my father found the Wikipedia entry for WG, and thought I was as good as dead. It's the main reason I made my site, because there's not much easily accessible information in the UK for some reason.
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I, too, saw that article, and thought of sharing it with the group, but didn't. I'm so glad you were proactive, Tippon, and got in touch with his family. The best thing he could do is join this forum, in addition to getting a doctor who understands our disease.
I, too, remember searching WG on the web, Wikipedia and such, and becoming unduly alarmed. Not that having Wegs isn't cause for alarm. But joining and reading the forum was a huge step in realizing that there is more hope for us to have somewhat normal lives and lifespans than one might be led to believe.
Anne, dx'ed April 2011
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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.
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Problem is, Kirk, that finding a balanced point of view, whence to develop an accurate assessment of matters, takes a lot of work. (Insert your own joke about echo-chamber blogs and radio talk shows.) A newbie has a terrific struggle separating the wheat from the chaff, the sheep from the goats, as it were. Still, it blows my feeble mind that the guy's medical folks did not preempt the poor fellows concerns. Facts: 1) You cannot translate a statistic into a prediction for an individual; 2) statistics are always a moving target--it is like taking a picture of a horse race with a time exposure, in that you lose clarity; and 3), the available statistics do not, in any case, support such a dire prediction.Originally Posted by me2
By the way, Tippon, I tried to look at your website, but it would not load. Too much traffic, I hope...?
Al
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Thanks for the heads up. I'm supposed to be in the middle of moving web hosts and updating the site, with two of my sites, but the new host has gone down while I was rebuilding both sites
I'm going to give them a few hours, then move everything back if they haven't fixed it
Registered User
Still not up. You should be sleeping now; I'll check in the morning....Thanks for the heads up. I'm supposed to be in the middle of moving web hosts and updating the site, with two of my sites, but the new host has gone down while I was rebuilding both sites
I'm going to give them a few hours, then move everything back if they haven't fixed it
Al
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