More Wegerner's people than thought?

[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!