I hate stories like this

[Tippon]

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 (http://www.northdevongazette.co.uk/news/life_changed_by_rare_disease_1_1345529)

[Rose]

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.

[Tippon]

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 :)

[Sangye]

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.

[Tippon]

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.

[annekat]

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.

[me2]

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.

[Al]

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.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.

By the way, Tippon, I tried to look at your website, but it would not load. Too much traffic, I hope...?

Al

[Tippon]

By the way, Tippon, I tried to look at your website, but it would not load. Too much traffic, I hope...?

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 :crying:

I'm going to give them a few hours, then move everything back if they haven't fixed it :(

[Al]

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 :crying:

I'm going to give them a few hours, then move everything back if they haven't fixed it :(
Still not up. You should be sleeping now; I'll check in the morning....

Al

[Tippon]

Still not up. You should be sleeping now; I'll check in the morning....

Al

I'm officially stupid. I put the wrong settings in when I changed the host details... :predrage:

Corrected it now, but have to wait up to 24 hours for it to be updated.

[Sangye]

LOL Glad it's official, Tippon. I'm still waiting on my certification. There's an enormous backlog here in America. :wink1:

[freakyschizogirl]

Hi Tippon, i saw a link to this story by one of my Weggie friends on Facebook, might even have been Susan Mills.

So glad you were able to get to talk to his sister. The story really did make me angry, but i too saw the info online. Getting this disease and googling it, it felt like a death sentence.

:thumbsup:

[Tippon]

I can't understand why so many of the articles out there focus on the worst case scenario. Don't give false hope, but make it clear that it's not a death sentence, except in rare cases :wink1:

[pberggren1]

LOL Glad it's official, Tippon. I'm still waiting on my certification. There's an enormous backlog here in America. :wink1:

Come to Canada. You can be certified over night......lol.

[freakyschizogirl]

I can't understand why so many of the articles out there focus on the worst case scenario. Don't give false hope, but make it clear that it's not a death sentence, except in rare cases :wink1:

I dont know but my guess would be doctors are afraid of giving false hope. Last year my Step mum was told her cancer was terminal and she had 18months to live, this year she's been told her cancer responded really well, and unexpectedly, to chemo and they can now operate and offer her different therapies.

In extreme cases and where the disease has been undetected this disease can be terminal, but with the right treatment we can all expect to live out our lives. I think thats what they leave out of these articles.

[Dryhill]

[QUOTE=me2;57833]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. QUOTE]

Great sense of humour, keep them coming!

I am amazed how the chap has got such a negative view especially as his mum mentions how much help Vasculitis UK were. The latter organisation has a very good website where people can post questions just like this site (it is a good site but no where as friendly and supportive as we are), they also have telephone and email helplines. There is also the UK's NHS website that gives information about WG and all forms of Vasculitis.

I was lucky my family had read the usual rubbish on Wikipedia but kept the nasty bits away from me and I have a doctor with a very positive attitude. So by the time I got home I was aware that this is a really nasty disease but with the right care and treatment I should be able to lead some form of productive life. Recently I went on the Wikipedia site and added a section about RTX, I think I will go back and add a paragraph about this site plus the Vasculitis UK and Rippon's sites.

Jim

[rif]

I read this article on line and it mad me so angry.
Hopefully this guy will come and join everyone here and learn the real facts on this disease and see there can be life after diagnosis.

Rif

[drz]

I dont know but my guess would be doctors are afraid of giving false hope. Last year my Step mum was told her cancer was terminal and she had 18months to live, this year she's been told her cancer responded really well, and unexpectedly, to chemo and they can now operate and offer her different therapies.

In extreme cases and where the disease has been undetected this disease can be terminal, but with the right treatment we can all expect to live out our lives. I think thats what they leave out of these articles.

Treatment for cancer seems to be moving rather quickly too so survival rates keep increasing. Sometimes the treating doctors are not keeping up with latest advances. Sometimes they don't offer the latest advance in treatment so don't inform patients of that option. I know this has happened with with some people locally for cancer and other health issues. They were able to get successful treatment after going to Mayo Clinic or University of Minnesota where they have specialists that can offer more complicated and the latest treatment procedures. My recent surgery for osseo-integrated hearing implant (BAHA) would be one such example. My wife's lymphoma is another. A neighbor also got treated successfully for liver cancer this way.

We all know that surviving a serious GPA (Wegs) attack is highly related to getting correct treatment early and people can and do die from failure to get correct diagnosis and treatment in time. And some of us barely made the cut and a few here were not so fortunate. I think (or hope anyway) awareness of GPA is slowly increasing as I hear of more cases being diagnosed and people surviving with treatment. But the case referenced is a mystery too since those resources referenced should certainly have know about current treatment procedures and survival rates.

Was there some unusual complication for him that we don't know about?

[Sangye]

I found this group and got to JHU at 2.5 years post-dx. At that point I was like this fellow-- pretty sure I wouldn't live long. This was due to a number of factors. My first local doctor (pulmy) was terrified of Wegs because he had lost a patient to it a few months before me and had dx'ed me within a day of losing me as well. Even though he was a great doctor, he made some big mistakes that caused damage. And some terrible complications happened that were not his fault but put me in "unchartered territory." My rheumy didn't know or care enough to be terrified. He was completely negligent. I was in constant fear of him missing major things, which actually happened all the time. Beginning the day I was dx'ed I had non-stop, severe, rare complications. I don't even know how many times I was hospitalized for the first 2.5 years. By my 2nd year I got to Mayo AZ, where the non-Wegs rheumy spent the next 1.5 years telling me I needed to go back on high-dose pred or I'd soon die. I knew that wasn't true but I also wasn't feeling well. And I didn't have great internet access. So all that time I lived in absolute terror, having no idea what the heck was going on.

I actually had PTSD from that period. I think I cried at every visit with Dr Seo for the first year he treated me. I just couldn't get my head around the fact that I wasn't on the brink of death-- that this thing could be managed. It took me a long time to climb down from the ceiling.

[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 :thumbsup:

[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.