More Wegerner's people than thought?

[jakekell]

I know this is a rare disease, but wondering if it is getting better known so more getting dx correctly. My neighbor at our lake place husband passed from WG's due to kidneys. My neighbor her in Naples has a nephew with WG's now 27 doing pretty well. The eye doc's assistant's best friend has it and her friends took time to learn about it.

I hadn't run into anyone in the passed 8 years that even heard of it and suddenly 3 people. I wonder if anyone out there has any idea of how many wegs are out there.

Mary

[kaysee]

I believe I remember reading someone on the forum say it is 1 in 30,000. Does anyone have a link to research that estimates the occurrence of our dumb disease.

[Pete]

According to medscape.com, there about 3 cases/100,000 people in the USA.

[jakekell]

I found an article by Ville-Forte in 2008 Rhemy magazine where she said "Each year, only about 500 Americans are diagnosed with Wegener’s granulomatosis". I wonde.r how much that has changed

[drz]

This issue has been discussed many times on this forum. The numbers vary according to criteria used. The number diagnosed each year is of course much less than the number of total people afflicted with the illness. And whether you count the people who were diagnosed but are not in treatment since they seem to attain a long term remission. Or just count the ones still involved in treatment.

In countries where they have a socialized medical system on a national basis they have better or more accurate numbers or at least estimates of how many Weggies you might find in the population, at least those undergoing treatment or diagnosis in some time frame. Phil and I discussed the estimated numbers several times and generally agreed that the incidence ran some where around one in several thousand for patients with active cases which varied by locations.

Incidence also varies by climate as Wegs tends to be less frequent in tropical areas, much like muscular dystrophy, MS, and many other diseases, although we don't know why. It might also vary by ethnic background as it seems to be less frequent in Asian countries too and more pronounced in those of European background. But then so do many other diseases.

[Mas78]

I haven't really ever told to many people I have WG. but last summer my neighbor told me in an email she got some labs back and that she didn't have Wegener's. so I had to ask if she ment granulomatosis, found out her mom passed away in the 70's I believe from WG.
so I bet there are more people wondering around with WG than any of us could ever know.

[jakekell]

drz,

Yes I realize that was just number diagnosed (est) not the number being treated. That est was per the article, even over 30 years the numbers would be small here, assuming est is close. I am aware the that these diseases vary by location and have no est outside the US. I have had wegs 8 years, but only joined a year ago so must have missed it. I just found it strange after all these years, 3 people I am now in connection with knowing 3 others with wgs.

[jakekell]

I haven't really ever told to many people I have WG. but last summer my neighbor told me in an email she got some labs back and that she didn't have Wegener's. so I had to ask if she ment granulomatosis, found out her mom passed away in the 70's I believe from WG.
so I bet there are more people wondering around with WG than any of us could ever know.

I bet the same thing, just no good tracking of who has what in the US anyway. I don't tell a lot of people either, but due to a bad flare up it up why I wasn't out of the house much. The doc office of course due to the eye flaring up.

[drz]

Prevalence versus incidence: Prevalence and incidence are different measures of a disease's occurrence. The "prevalence" of a condition means the number of people who currently have the condition, whereas "incidence" refers to the annual number of people who have a case of the condition. These two measures are very different. A chronic incurable disease like diabetes can have a low incidence but high prevalence, because the prevalence is the cumulative sum of past year incidence rates. A short-duration curable condition such as the common cold can have a high incidence but low prevalence, because many people get a cold each year, but few people actually have a cold at any given time (so prevalence is low and is not a very useful statistic). To understand prevalence versus incidence, consider these examples (which over-simplify but are still hopefully useful):

• Short-duration disease: A person who has a common cold for one day, would be added to the incidence statistics, but (theoretically anyway) shouldn't be on the prevalence list.
• Newly diagnosed chronic disease: A person diagnosed with diabetes will be on the incidence numbers and prevalence numbers in that first year, but then only on the prevalence numbers for second or later years.
• Deaths: A person who dies from a disease stops being on the prevalence data for both later years and also the current year (unless prevalence statistics include this time period). That person will be on the incidence numbers only for the year they were diagnosed, and not in the year they die if they had the disease more than a year. A death from a short disease like flu does get included in incidence, but not prevalence. A death after many years from a long-term disease like diabetes removes that person from prevalence numbers (and they should only have been on the incidence data their first diagnosis year).

I get my prescriptions from a local internist who probably sees a couple thousand patients each year at most and she told me she has three Weggies on her caseload. I also know of three cases in our small town which would average out to one case per 4,000 prevalence. I don't assume I know about all of the Weggies either since many people tend to keep such info secret but when they have a rare disease it seems more likely to become known and then other people tell me so and so has your disease too.

[annekat]

Mary, my gut feeling tells me that there could be more incidence due to environmental toxins and such. But also that many have been undiagnosed throughout history, so we will never know how many there really were. It definitely seems to have become more out in the open due to better diagnostics, more awareness by physicians, and way more info available to everyone now that we have the internet. Aside from all that, when I tell people not in the medical field that I have Wegener's, I've had three so far, that I can remember, say that they know some who has it. This was totally random, and the patients are all in different parts of the USA. Then there are still many who have never heard of it, and some of these are in the medical field. I don't tell a lot of people. If I say I have vasculitis, that usually draws a blank, too, though I think I'd heard of it before getting Wegs. I had no idea what it was, though... just that it was probably something serious.