Originally Posted by
annekat
This is another statement that I think makes no sense. A "mortality rate" would mean a percentage of people dying, not a length of time. Are you saying that without treatment, the average Weggie will die in 5 months?
As was already posted several studies quote that median life expectancy of 5 months after diagnosis if left untreated, but I'm not sure where they get that number from. I mean it would be a bit silly if they kept a group of Wegs each year without meds to see how long they survive, so maybe its based on data from before there were any meds avaialable to us, an back then it probably took a much longer time to diagnosed as ANCA & PR3-values are a more recent discovery. I also remember reading that 90% died within a year if left untreated, but again why would anyone be completely untreated?
I did read a dissertation about Wegs, which collected data from 1980 and forward, and it had more data on the mortality rates. Not really sure if its useful info, since I don't think dwelling on the subject really has any benefits. Additionally I don't think those statistics can be applied that easily from person to person, I mean it makes a great difference if you are talking about someone who is 85 years old and the first symptom is kidney failure, or if you are talking about a 15 year old who starts with nasal symptoms. Obviously the 85 year old wouldn't be expected to live for 20 years even without Wegs, but will still affect the statistics.. A 20 year follow-up wouldn't either take into account the better meds people have today and the advances done in recent years, like account for Rituximab and less use of cyclos. But that's just my opinion
Diagnosed 08/2013, Relapse 07/2014, Relapse 5/2017 (although early signs of it from 12/2016)
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