Close to home

[Randy]

That's true, look how long it took them to figure out that asbestos and smoking were dangerous.

[watersedge]

I've been reading a lot the past few weeks about silica exposure and wegeners and trying to find some sort of link or understanding into how my dad picked up wegeners. He was a docker all his life and I had read about coal miners, sandblasters, farmers and other types of occupations being exposed to it. Grain dust is a form of exposure which I was suprised by and my mam told me he worked a lot of boats like that and also coal boats and potash boats. My mam remembers daddy saying that he and other men sometimes had nose bleeds from inhaling the dust. A lot of the men that my dad worked with died quite young, in their mid fifties including my dad. A lot of them had breathing and copd conditions and wonder if any of these men had wegeners like my dad that went undetected considering that they all endured long term exposure to silica.
Here is an article I read lately if anyone would like to read it, hope the link works.
Silica Exposure in Anti-Neutrophil Cytoplasmic Autoantibody-Associated Glomerulonephritis and Lupus Nephritis

[watersedge]

Here is another link,

http://www.bluewaternavy.org/illness...autoimmune.pdf

[annekat]

Those are interesting links, watersedge, and thanks for sharing them. I am a potter and have accepted the fact that exposure to silica dust could be a trigger for my Wegener's. I can't stop the work right now, I need the income, but can be more careful in how I protect myself when doing certain parts of the process. Also keeping my studio clean is of the utmost importance, and while cleaning it, I must wear proper respiratory protection. I admit I'm not as diligent as I should be on some of these things, so your posts are a good reminder.

I do not make pottery all day every day and I'm sure I'm not exposed to as much silica dust as the people you mention, the miners, farmers, and other industrial workers such as your dad and the men he worked with. I hate to think of all the people who have died of Wegeners without ever knowing what it was they had or what activities they engaged in that may have caused it. And of course their employers would have had no clue either that they might be killing their employees due to unsafe practices.

I'm sorry you lost your dad, and am glad to see you still contributing to the forum.

[watersedge]

Thank you Annekat, I used to be on the forum quite a bit but just pop in now and again lately. I know you probably have all read similar articles before but sure there is no harm in posting them again. On the subject of close to home, a neighbour of my parents who only lives a stones throw away has had wegeners since he was 16.
What a nice job you have, I'm sure you are very creative.
My dad is gone nearly 2 years now on the 28th of March, something I find quite hard to accept. To say that time is a healer is not the case, everyday that passes drags me further away from the last time I saw him alive. Somewhere inside I think he is still alive and if I go down to the hospital he will still be there in the same bed waiting for me to bring him home. My heart is broken over him, just to see him again I would give anything. I often think that this would all be so much easier if he had not have been such a sincere, protective, loving, caring dad.

[annekat]

Thank you Annekat, I used to be on the forum quite a bit but just pop in now and again lately. I know you probably have all read similar articles before but sure there is no harm in posting them again. On the subject of close to home, a neighbour of my parents who only lives a stones throw away has had wegeners since he was 16.
What a nice job you have, I'm sure you are very creative.
My dad is gone nearly 2 years now on the 28th of March, something I find quite hard to accept. To say that time is a healer is not the case, everyday that passes drags me further away from the last time I saw him alive. Somewhere inside I think he is still alive and if I go down to the hospital he will still be there in the same bed waiting for me to bring him home. My heart is broken over him, just to see him again I would give anything. I often think that this would all be so much easier if he had not have been such a sincere, protective, loving, caring dad.

Watersedge, I had only read about the possible silica dust connection from time to time on this forum. I hadn't read the exact articles you shared and there is absolutely no harm in posting things we've read before.... there are many new people on here who may not be aware of these things. And since they say there's "no cure", and no definitive known cause, we are still sort of in the dark and need to hear of anything that might make some sense.

Coincidentally, I lost my dad on March 12, 2011, just a few weeks before my WG diagnosis, when I was quite sick and couldn't go see him in his final days. He did not die of WG. He was 83 years old and lived a normal lifespan. But it was especially hard to take under the circumstances. It has even taken me awhile for it to hit me and for me to fully grieve. I'm still going through the process. My dad was as caring as yours, I'm sure, and sometimes a very fun guy to be around, but in general, a fairly inward person and more the "distant father" type than yours sounds like. Which makes some of the feelings a little more buried and hard to assimilate into the grieving process. I'm glad you had such a wonderful father and it's really a shame that he died so young from this rotten disease. It's very understandable that you are having trouble accepting it.

[watersedge]

Annekat, I am so sorry that you lost your dad too, I know that your dad was 83 and mine 59 but it does not matter what age they leave us at, it does not make it any easier. I am a parent of 3 young children who keep me going and make life worth living for but even though I am a grown up and have responsibilities, when I was around my dad I still felt like a child at heart, it is nice to have somebody who fusses over you and who makes you feel so loved, that is what I miss, just his presence.
Are they your own creation, the bowls in your picture, they are very nice. I love gardening myself, can't wait to get back out in it after the long winter, I can see all the new growth coming through the soil and the stretch in the evenings is great.

[annekat]

Well, I guess most of us do lose our dads. It's hard when things go unexpressed for years and then they are gone and it's too late.

Yes, that is my pottery, my stack of bowls. They do not look as good in the picture as I hoped they would. But I'll find other pics to post there. As for gardening.... yes! Green things are coming up here, too. I'm working a seasonal job for a lily bulb farm, and have many of their lilies growing in my yard. Will post pics of those, too.

[Sangye]

(Nice to see you, WatersEdge )

Silica exposure is one of the only proven causes of Wegs. (Though it's obviously not the only cause, since most of us haven't been exposed)

I asked Dr Seo once what he thought of the genetic link. He said Wegs occurs in AI families in the same proportion as in non-AI families, so there doesn't seem to be a genetic link. We've had this discussion many times in this group. His statement has always been borne out by our responses-- for every Weggie who has AI diseases in their families there is at least one Weggie who doesn't. I'm a doesn't.

[watersedge]

Hi Sangye,
How are things? Hope all is well with you.
Silica exposure is about all I could find too as one of the more proven causes as well as reading a lot on stapplococcus aures bacteria (my attempt at spelling lol). I sure do hope that someday they find a way of curing it. A lot of the reading on research can sometimes get a bit heavy and bogged down in medical terminology and hard to understand.
Take care