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 (http://www.rightdiagnosis.com/d/diabetes/intro.htm) 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 (http://www.rightdiagnosis.com/c/cold/intro.htm) 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 (http://www.rightdiagnosis.com/c/cold/intro.htm) 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 (http://www.rightdiagnosis.com/d/diabetes/intro.htm) 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 (http://www.rightdiagnosis.com/d/diabetes/intro.htm) 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.

[jakekell]

Anne,

I am sure your right that so many were undiagnosed and possible in the medical community are more are then years ago. I guess I was surprised after all these years that I am suddenly having people that know someone with it. I know my issues began many, many years before I was able to get anyone to pay attention.

Mary

[annekat]

Anne,

I am sure your right that so many were undiagnosed and possible in the medical community are more are then years ago. I guess I was surprised after all these years that I am suddenly having people that know someone with it. I know my issues began many, many years before I was able to get anyone to pay attention.

Mary You DO have a different perspective, having had WG longer than many of us. I've only been dx'ed for four years and had only seen the name of the disease on the internet when researching my sinus and ear symptoms. Then when a doc suggested I might have it, I at least had heard of it, of course having never dreamed that I could have it. I still get surprised when I talk to someone who has heard of it or knows someone who has it. But it would not surprise me to learn that it is becoming either more common or that more people are finding out about it. It is a shame that you had to go so long with issues that no one would pay attention to. I can only hope that is changing and people are being listened to more now that awareness may be increasing.

[jakekell]

I think there are so many people with the same problem of dealing with docs that aren't looking outside the box. Where we lived at the time the issues began wlas a med size city at very best. I travel to CC now for wegs as no one around Kalamazoo area that should be treating wegs any longer. When in Naples I have so many good docs to choose from if I have a problem. I my have a different view due to length of time then suddenly people popping up like that.

[Tom]

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
Yes I agree that there are more of us out there!
I found out a couple of years ago that a guy that was married to my cousin had Wegs and died from a pulmonary disease! That would have been in the early 70's ut when he was told about it and he needed to go on 02, he refused it but succumed to the disease a year later with no treatment! I was a 14 year old kid when that happened and he was mid 50's! I wass shocked when my cousin had so much info on it when she asked me if I had Wegs Granulomatosis? She told me that kirk had the same thing! Im 58 now! I talked to another cousins wife last year and she said that her dad had just passed a month earlier and asked what my 02 was all about! When I told her wegs, she replied tht an autopsy on her 86 yr old dad showed he had wegs. He died from lung failure that was supposed to be an easy treat but he took worse and died from infection a week later! No evidence that the wegs casued his infection but the cousin said that he had shown symptoms such as mine over that last year or 2!
Another man from my home town died after a long battle with Wegs last year!
It has been discussed here and other forums, possible causes of the disease!
I tend to think my introduction to it was environmental! Ive had too many co-workers die from lung cancers, throat cancers, colon cancer etc. I even battled colon cancer and went from getting cured to e years later when I'm dx'd with wegs and I'm on 02 and lost 2 lobes of my right lung and the kidneys got hit also!
Info I read at the start of my dx was that it was gender equal but more prevalent in Caucasians but not limited to any one ethnicity!
I believe that your back ground as in how and where you were raised may have some bearing on the onset of Wegs!
It is supposed to be more prevalent in the 5th decade of life, but reading reports and forums, I find that to be not necessarily true as it affects all ages!
As I learn or try to educate myself on the disease, I find that Vasculitis does not discriminate!
There are more out there that havent been dx'd!
This disease has a cause and when that is found, I am confident that the treatment or better, the cure for this damn thing!

[jakekell]

Tom,

Wow that is a lot of people. I am on 02 at night and have been 4ish years. I don't seem to have had serious lung issues so something tells me with all the sinus issues just not enough air coming through. I don't have an issue in the day or at least didn't seem to be when tested. I have an idea that a lot of wegs may need the 02 and not aware of it. My wegs doc didn't check my 02, but a doc that was into natural cures did. I was put on it right away, not super low at night just enough that I needed it for sure.
,
I have also read that it was more prevalent in Caucasians, that would be interesting to know the ratio's. A cure would be wonder, they will get the answer one day.

[annekat]

There are so many variables in who gets Wegs, what triggers it, what parts of the body will be affected and what the symptoms will be... no wonder it would be hard for the general public to get a handle on what the disease is and remember its name. A person might know one person with Wegs and assume that all Weggies will have the same experience, involvements, and symptoms, and that wouldn't be true. So they could be talking about two different Weggies, one with kidney involvement and on dialysis, and one with just severe sinus and ear issues, and it would sound like two different diseases. What people need to know is that it is a serious autoimmune condition, one among many, and that they all are unpredictable and potentially life threatening. Maybe the cure would be the same for all of them, who knows?

[jakekell]

The involvement does different greatly and unpredictable is the perfect word for this disease for sure. The damage going on in the inside of us goes back to many discussions of being invisible. One person called this an "orphan disease" when it comes to finding cause and cure as numbers don't warrant the big bucks.

[annekat]

The involvement does different greatly and unpredictable is the perfect word for this disease for sure. The damage going on in the inside of us goes back to many discussions of being invisible. One person called this an "orphan disease" when it comes to finding cause and cure as numbers don't warrant the big bucks. That's why people like Marta are promoting the idea of looking at AI diseases as a related group with potentially related causes and cures. Then the numbers of people affected will be far greater and might warrant more research dollars. If we can only get them to look at it that way. She calls it finding the "common thread". It would be a start to look at vasculitis diseases as a group instead of individually, but I suppose that is already happening, and vasculitis is still pretty rare, I guess. It seems like Wegs is one of the more common vasculitis, from what I see on Facebook groups.

[Alias]

The 1 in 30k figure is the one I've seen cited most often, but I haven't been able to get much beyond that. Regarding geographic concentrations, one wonders how much of it is due to the sophistication of medical facilities and their ability to diagnose. In any case, the data base for research is small!

[Tom]

The 1 in 30k figure is the one I've seen cited most often, but I haven't been able to get much beyond that. Regarding geographic concentrations, one wonders how much of it is due to the sophistication of medical facilities and their ability to diagnose. In any case, the data base for research is small!
Hi there Alaskatom,
I've posted this little tid bit before. My oncologist asked me about my ancestry at one of my appointments as he was just sharing some cancer facts and other information that was interesting!
The one topic he told me about that was really interesting was that the medical world has noted a distinction of diseases of European ancestry and that of Nordic ancestry!
It goes something like this, People with European roots tend to suffer from arthritis, vasculitis diseases and other of AI diseases!
People of Nordic roots tend to suffer from ALS, MS and other muscular diseases more than European rooted folks and the opposite is true for the Nordic ancestry!
That for what its worth is all I could share on the geographic concentrations as it is an angle that the medical people have looked at!
He said that when he read a report on it ,he got curious about his patients and their ancestry!
I guess it feels like a little bit of trivia regarding our journey through all of this! I am of European decent! Great grandparents came from France on dads side and mother is of Irish and german mix decent or so I'm told! It would be interesting where we all would fall and do our own little study and see if it pans out as I was told!

[Dirty Don]

Here ya go Tom: Spanish (as in Spain), American Indian, and a wee bit of Scotch. Now what do the docs do with that? Would be interesting to keep track, just to see...personally, I think it may be more of a climate/regional thing as much of the population of the earth is so integrated now it would be very difficult to prove an ethnic/regional propensity to any disease. Well, it could be possible considering regions (hard to get malaria in the desert for example). Just rambling...interesting thought tho Tom. OK, everyone take aim and fire!!! Best to you.

[Alias]

Hi there Alaskatom,
I've posted this little tid bit before. My oncologist asked me about my ancestry at one of my appointments as he was just sharing some cancer facts and other information that was interesting!
The one topic he told me about that was really interesting was that the medical world has noted a distinction of diseases of European ancestry and that of Nordic ancestry!
It goes something like this, People with European roots tend to suffer from arthritis, vasculitis diseases and other of AI diseases!
People of Nordic roots tend to suffer from ALS, MS and other muscular diseases more than European rooted folks and the opposite is true for the Nordic ancestry!
That for what its worth is all I could share on the geographic concentrations as it is an angle that the medical people have looked at!
He said that when he read a report on it ,he got curious about his patients and their ancestry!
I guess it feels like a little bit of trivia regarding our journey through all of this! I am of European decent! Great grandparents came from France on dads side and mother is of Irish and german mix decent or so I'm told! It would be interesting where we all would fall and do our own little study and see if it pans out as I was told!

Yes, very interesting. I haven't spent a lot of time looking at epidemiologic studies, but one bit I saw noted a lower incidence in non-caucasians, and a gradient of incidence increasing from south to north... if I understood correctly. Maybe they controlled for this somehow, but I would still think the availability of treatment and ability to diagnose would make it difficult to figure out. The same study, I think, concluded that the cause is likely multi-factorial, i.e. both genetic and environmental.

[renidrag]

Ready, aim, I would never fire at you DD. All my ancestors from England, where does that land me? Hope all is well.
Dale

[annekat]

Ready, aim, I would never fire at you DD. All my ancestors from England, where does that land me? Hope all is well.
Dale Pretty much true of me, too. Maybe some small bits of Irish, Scottish, and an even tinier bit of French thrown it.

[jakekell]

Tom,

Wow that is a lot of people. I am on 02 at night and have been 4ish years. I don't seem to have had serious lung issues so something tells me with all the sinus issues just not enough air coming through. I don't have an issue in the day or at least didn't seem to be when tested. I have an idea that a lot of wegs may need the 02 and not aware of it. My wegs doc didn't check my 02, but a doc that was into natural cures did. I was put on it right away, not super low at night just enough that I needed it for sure.

I have also read that it was more prevalent in Caucasians, that would be interesting to know the ratio's. A cure would be wonder, they will get the answer one day.


My Family (both side) were Scottish and my dad's side were Vikings that landed in Scotland way, way back. I am 2nd generation in the US.