I hate stories like this

[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...

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.

[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.

[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

[pberggren1]

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

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

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.