Who are the 10%?

[norcalian]

I was recently diagnosed with WG and am new to all of this - and perhaps this has already been discussed somewhere...but a statistic I've heard is that Wegener's patients today have a 90% survival rate (which is good, I guess), but who are the 10%? Is that still accurate? I know this is an impossible disease and that number is vastly improved over 20 years ago...but it seems treatable. I guess as I'm trying to understand this disease, I'm wondering under what conditions people loose the fight with Wegener's. Sorry, if this is question is a bummer...

[pberggren1]

I would suspect that within NA and Europe the survival rate is much higher that 90% now.

[norcalian]

That's true - I guess I hadn't considered the fact that the 10% statistic might be a world-wide number.

[malin]

I think perhaps the majority of people who do die from Wegs are the ones that aren't really diagnosed and didn't start treatment until it is too late?

[Kimbangu]

In the case of people who aren't diagnosed until it is too late, it's certainly likely that "Wegener's Granulomatosis" would be recorded as the cause of death. But surely for those in partial remission or whatever, ( at the time of death) the actual cause of death might be recorded as differently? - skewing the figures.

Like everything else with this sneaky disease, it's hard to get a true picture. I, too am interested in the most prevalent primary cause of death in persons suffering from WG. Is there one?

Like norcalian, sorry to be a drag by asking!

[Sangye]

Given how difficult it is to diagnose Wegs and how quickly it can become life-threatening, I'm actually surprised that it's "only" 10%. Dr Seo told me that once Weggies are dx'ed they're much more likely to die from infection than Wegs.

[Kimbangu]

Excellent point, there are probably so many who die without ever having been correctly diagnosed in the first place. But I would guess respiratory infections would be the main one.

[watersedge]

When my dad was diagnosed i remember reading the same thing, 90% survival rate and just being so happy that they had went through a week of ruling out cancer and everything else and it was treatable.
All i remember the doctors saying was that the wegener's itself was treatable, it was the cyclophosphamide that would cause the problems leaving him at high risk of infection, which it did as he caught pneumonia after his first dose, but i suppose the drugs themselves are the lesser of two evils as without them there is no hope. I think it also depends on your age and at what stage you are diagnosed. There are so many people out there with sinusitis and other complaints that have wegeners and unfortunately don't know yet. I think the disease is a lot more common, there is a guy I know in his thirties living only two doors up from my mam and he has had w.g. for years.

[Jack]

Of the people that are diagnosed and then die due to their Wegener's I get the impression that heart failure is one of the main causes. After being beaten up by the disease and the drug side effects for so many years, I certainly feel that I am at quite a high risk in this area.

[pberggren1]

I am a prime example of one that almost bit the bullet due to lung infection