How many of us are there?

[Alias]

Looking at the various stats and articles on the epidemiology of WG, I still can't seem to grasp how many WG cases there are at any given time. For instance, how many cases would there be in the U.S. now?

[Pete]

The statistic that seems to be most quoted is that there is 1 Weggie per 30,000 people. If there about 300 million in the USA, that would be about 10,000 of us.

[drz]

The statistic that seems to be most quoted is that there is 1 Weggie per 30,000 people. If there about 300 million in the USA, that would be about 10,000 of us.

I wonder if that statistic is for number of new cases diagnosed each year or for currently active cases. I know in previous discussions here using statistics from countries who had better stats on diagnosing Wegs many of us thought the actual number of current cases to be closer to one out of 5 to 10 thousand. Phil was pretty strong in this view.

[Debbie C]

TOO many that's for sure !

[drz]

research published in 2006
Descriptive epidemiological studies carried out primarily in European countries estimate a prevalence of WG ranging from 24 to 157 per million and annual incidence rates from 3 to 14 per million.

2014 The incidence and prevalence of GPA in the United Kingdom is estimated at 10.2 cases and 250 cases per million population, respectively.

Sweden 2009
The annual incidence per million of the population (95% CI) was estimated to be 9.8 (7.4–12.2) for WG, 10.1 (7.7–12.6) for MPA and 0.9 (0–1.7)

Prevalence studies suggest that the Wegener's granulomatosis is less common in the USA (26/million)15 (http://ard.bmj.com/content/59/3/161.full#ref-15) compared with Europe (40–60/million).4 (http://ard.bmj.com/content/59/3/161.full#ref-4) 7 (http://ard.bmj.com/content/59/3/161.full#ref-7) 16 (http://ard.bmj.com/content/59/3/161.full#ref-16)

In our study, the maximum incidence was in the 65–74 year age group whose annual incidence was 60/million,4 (http://ard.bmj.com/content/59/3/161.full#ref-4) whereas Tidman and colleagues noted a maximum incidence in men aged 55–64.

The term 'prevalence' of Wegener's granulomatosis usually refers to the estimated population of people who are managing Wegener's granulomatosis at any given time. The term 'incidence' of Wegener's granulomatosis refers to the annual diagnosis rate, or the number of new cases of Wegener's granulomatosis diagnosed each year. Hence, these two statistics types can differ: a short-lived disease like flu (http://www.rightdiagnosis.com/f/flu/intro.htm) can have high annual incidence but low prevalence, but a life-long disease like diabetes (http://www.rightdiagnosis.com/d/diabetes/intro.htm) has a low annual incidence but high prevalence. Prevalence will be higher since most (80% for five years or more) people survive Wegs with treatment

[mishb]

My specialist at a major hospital in Melbourne says that they see 80 to 100 patients each year.......this is current patients and new ones.
This is just one hospital and I know over 20 people, with WG, just in Melbourne and they each go to different hospitals. If each of these hospitals
also saw 80 to 100 people (they probably don't, but the larger hospitals would), that would mean there are about 2,000 plus people in Melbourne alone,
not counting those that I know of in the Country areas of Victoria.

Melbourne has a population of 4.25 million, therefore that would mean that there are one in every 2,000 + people with WG

With these numbers - there are 23 million people in Australia, therefore that would/could mean that there are potentially 11 thousand people with WG in Australia.

Does my maths sounds right - gosh I hope not :crying:

My thoughts are that there are about 4,000 people with WG in Australia - and I have no reasonings behind this number at all.

We currently have 157 members in our Australia and NZ facebook group.