Close to home

[Tom]

before cousin who passed away this past summer due to diabeties complications out of the blue asked me if it was Wegeners granulomtosis that I was taken aback that she had info on it. It seems her first husband who died when I was about 14 had Wegs. She said he had Wegs and it had got to his lungs and I knew he had work done on his vocal chords because he was hoarse the last several months of his life. I never knew that about him and wegs til recently. He wa an alcoholic and the Doc wanted to treat him for COPD but he refused and his last months were bad as I recall ,he was constantly sick and I thought it was just the alcohol. This was about 1971.

Second close to home. I ran into another cousin and his wife while shopping. I rarely see this part of my family and his wife asked how long Id been on oxygen, She is a nurse by the way. I told her what was going on with my health and as soon as I said WG, she told me that she just lost her dad 2 months earlier from a lung infection. Seems he had what they told him was pneumonia and was told that he would be admitted. Three days later he died. Dr's were baffled by the sudden loss and asked to do an autopsy. What they found was that her dad had WEGENERS and didnt know it but she said he had been fighting sinus infections and lots of colds the last year or so. He was 75. It just make one wonder how many wegs patients are out there undiognosed. I was told early in my Dx that the insurance companies didnt want to pay for testing until all other possibilities could be eliminated because you could get false results from lab test. Or unless you showed classic signs of WG as I did with the purprura. Looks to me like they would consider doing a series of test and save money in the long run. I was also told that because there are so few cases that it did not warrant the insurance companies paying for the test.

[Pete]

Close to home for my daughter-in-law: Her Dad's brother and I both have wegs. Hope the grandkids never have to deal with it...

[Tom]

Close to home for my daughter-in-law: Her Dad's brother and I both have wegs. Hope the grandkids never have to deal with it...

Wow, thats sort of the point I was making about more of us out there than they know. If the stat is 1 in 30,000 have wegs and you can actually find it in your sons inlaws and I found it just with in my family even though there is blood connection kind of tells me that there is more of it out there.

[pberggren1]

This is interesting. From what I have found Wegs is about 1 in 5,000. I know 2 other Weggies right in my town.

[ArlaMo]

I live in a smallish town (40,000) and have learned of two other Weggies in the past month (both recently diagnosed.)

[annekat]

Seems like there is enough of it going around that doctors should know to look for it and test for it on a routine basis. I agree, Tom, there must have been many undiagnosed for a long time. It seems there is less and less excuse for that.

[carriej22]

My doc told me 10 in 1,000,000 or 1 in 100,000 globally. However the disease is more common in certain areas. He seems to believe there is a cause as he said he has witnessed for himself they appear in clusters.

I just recently learned I lost an uncle from HS Papura (spelling) when I was 4. They say all these autoimmune diseases aren't related/hereditary but I think that's for the birds!

[annekat]

My doc told me 10 in 1,000,000 or 1 in 100,000 globally. However the disease is more common in certain areas. He seems to believe there is a cause as he said he has witnessed for himself they appear in clusters.

I just recently learned I lost an uncle from HS Papura (spelling) when I was 4. They say all these autoimmune diseases aren't related/hereditary but I think that's for the birds!

I've always heard 1 in 30,000. Here in my area, that sounds about right, from what little I know about other Weggies in my general community of several small towns clustered together.

Maybe they say it isn't hereditary, but I'll bet there are genetic predispositions. My whole family has sinus problems, deviated septums, etc. Could make them all susceptible to infections that could trigger Wegs. And there has been some chemical sensitivity in my family, allergies, stuff like that, that also sounds like things that could lead to conditions that could trigger Wegs. Since they don't know for sure what the full range of things are that could trigger it.

[Pete]

Hi Anne,

It seems like much of the research on GPA is aimed at validating the genetic disposition and hereditary hypotheses. At any rate, I hope a cause is found, and that such discovery will lead to better diagnostics and treatments. Until they do, I guess I'll keep on keeping on.

[Tom]

The 1 in 30,000 is the stat I get from reading. My drs just agree that its rare. The best explanation of the causes of it are surgeries or injuries or maybe viral or bacterial infections. That about covers all the bases, LOL. My rheumy gives me the impression that science has been chasing the answer forever. Eveytime thye thought they might have it pinned down, the theories are shot down. I wondered if it was something that could lie dormant. I had a foreman on my job that had a boy born the same day at the same hospital in 1956. His wife could have been my moms room mate in those days they doubled in rooms. There was a total of 4 boys born at tht time and 2 of those 4 boys died from what the foreman was told was a virus. His son was one that was lost. My Dr says it wont lie dormantlike that. He and his wife took to me only for the connection all those years later. I asked about weed killer I spread thu the years on my job or the rock dust I was always in. I worked in the railroad industry and rail cars would go bay leaking who know what and cleaning up deraliments, who knew what was in some of those over turned rail cars. Those idea dont wash either because there were a couple thousand over the years I worked and then those who came before me, They suffered no Wegeners dx that I know of or if it would have been dx'd. I tend to think that it is a gene either missing or defective that causes it but Im no scientist. Its like my first pulmo said, "I will be on the lookout for wegeners in her patients for the next 5 years and never see it , but now she will always look for the rest of her career"! I think that if there is more dx' that more awareness of the disease will bring it closer to a cause and maybe a cure. It just seems like only those of us afflictied or have family or a friend with it that it is virtually an unknown disease. I know with all my being that if I hadnt gotten the purpura, I would have died within a few weeks of my breathing troubles because they were treating me for COPD and it had already took my lungs and was into my kidneys and now the cardio beleives it has weakened the left ventrical on my heart and I take medication to help that.All the damage the wegs has done to my body was done with in a 4 month period and with the purpura and it had already damaged the lungs and within a 2 week period damaged the kidneys. I guess it foes back to the point that there should be priority given to testing for wegs if symptoms like ours exist. Its simply awarness by the medical drs.