WTC First Responder and my first post

[MikeG-2012]

The best advice I can give you and I think you'll get the same advice from most anyone on the forum is to not let this disease rule your life. Be vigilant about treating it, but, otherwise, try to do everything you normally would.

Well said my friend. I have my job, and that is about the best thing for me. It keeps me going, gives me sense of purpose, something to do and also provides INSURANCE.

[Pugdog]

Not an EMS , I was diagnosed while in college. During that time I had part time job landscaping, Dr told me I may have contracted WG from inhaling the mulch. Your symptoms sound so much like mine originally.

[vdub]

Dr told me I may have contracted WG from inhaling the mulch.

I'm certainly not a doctor, but i wouldn't think that inhaling mulch would do much to cause or even trigger gpa. I grew up in northern Idaho where timber was one of the top industries. Between sawing trees down, delimbing them, debarking them, sawing them into lumber, planing them to size, etc, etc, there's a lot of bark (mulch) flying around and I don't think I've ever heard of anyone getting gpa. We also have (had) a mulch making plant in town and I didn't hear of any adverse effects from it. I don't recall the guys even wore masks.

I think most research is leaning toward a person having a predisposition for the disease and then something triggering an onset of the disease. I have heard that mental or physical stress, viral infections, or compromised immune systems might be triggers to put the disease on course, but I haven't seen any research that it might be caused by some external irritant along the lines of say something like black lung disease being caused by coal dust or lung cancer be caused by smoking.

Several veterans tried to tie wegs to agent orange, but I think the VA nix'ed that idea. The VA does maintain a list of presumptive diseases if you were exposed to agent orange. The list is at the url below. No AI diseases are on the list.
Veterans' Diseases Associated with Agent Orange - Public Health

[annekat]

I have heard since joining the forum in 2011 that silica dust, in raw form or fired, as in clay or glass making, has been thought to be a trigger for the onset of Wegs, even if only in those you describe as having a genetic predisposition. I make pottery, but there is no way of knowing whether the silica dust I've been exposed to was the trigger, though it could be. I remember people on here describing getting it after working in a glass bottle factory, and others who've mentioned certain areas in Wales, Canada, or elsewhere, where there were pockets of GPA cases within a small population and some kind of mining or chemical use was nearby. We'd have to search the archives to find these old posts. I also believe it can be triggered by infections in susceptible people, and a lingering cold could have been the trigger for me, followed by inhaling very strong incense at a funeral. Back to silica dust, I would think there'd be a LOT of it at the site of the destroyed WTC, along with many other nasty things that one shouldn't inhale.

[mishb]

I know that when we purchase bags of mulch or fertilizer or potting mix/soil, it has a warning on the bag, that if you have an auto immune condition, then you should wear a mask and gloves when handling.
I chose to let my husband use it whilst I stand and watch

[mishb]

I also believe it can be triggered by infections in susceptible people, and a lingering cold could have been the trigger for me, followed by inhaling very strong incense at a funeral.

Very interesting that you mention this because I know that exact day I became ill with WG.
It was the night of my fathers funeral

I did have the joint pains for a couple of years before this and was eventually diagnosed with RA, but the sinus infections from hell, started the night of my fathers funeral, which did have very strong incense at the church. I guess that was also the last day I could smell.

[vdub]

I know that when we purchase bags of mulch or fertilizer or potting mix/soil, it has a warning on the bag, that if you have an auto immune condition, then you should wear a mask and gloves when handling

That is super interesting! It really specifies "if you have an auto immune condition", you should wear all that gear? That would mean to me they have found a direct connection of some sort. I'd love to see the study they are basing that on. Is it a specific brand of mulch that is acting voluntarily out of an abundance of caution or is it a law and the warning is on all mulch? Very interesting that they would specifically call-out AI diseases....

Very interesting that you mention this because I know that exact day I became ill with WG.

Mine dx was a loooong drawn out 2 years. I was treated for sinus infection 3 times during the last few months. I don't think they would have found the problem for several more months had I not had the terrible headaches and they decided to do an MRI on my head. That's when they found the granulomas in my brain with surgery to follow.

[annekat]

That is super interesting! It really specifies "if you have an auto immune condition", you should wear all that gear? That would mean to me they have found a direct connection of some sort. I'd love to see the study they are basing that on. Is it a specific brand of mulch that is acting voluntarily out of an abundance of caution or is it a law and the warning is on all mulch? Very interesting that they would specifically call-out AI diseases....

I think even if they didn't have hard scientific evidence, they'd probably heard things about AI diseases connected to inhaling things, and were at least "covering their butts" in case someone got sick, but it seems they should really say it about everyone. I see a lot of warnings, especially on cleaning products about people not inhaling fumes or powders, and it is precautionary, and people probably aren't always that careful and don't get sick. But they can. My boxes of clay warn that clay in the wet state is harmless but dry clay dust, raw or fired, must be protected against. They are probably thinking more about silicosis, which is not an AI disease. I don't hear of many potters getting it, only one famous one, that I remember.

[drz]

Asbestos has also been mentioned as possible causal factor:
http://www.medscape.com/viewarticle/542480

Here are some quotes from one study:

Conclusion: These preliminary findings support the hypothesis that asbestos exposure is associated with autoimmune disease. Refined measurements of asbestos exposure and SAID status among this cohort will help to further clarify the relationship between these variables.
An association between occupational exposures of inhaled particulates and autoimmunity was postulated as early as 1914, when Bramwell (1914) reported increased frequency of diffuse scleroderma (SSc) in stone masons. Although genetic factors undoubtedly exist that affect the development of systemic autoimmune diseases (SAIDs) in certain individuals, the concordance of SAIDs among identical twins is only 25–40%, suggesting that environmental factors play a substantial role (Powell et al. 1999). Indeed, several environmental agents are implicated in triggering or accelerating SAIDs, including mercury, iodine, vinyl chloride, certain pharmaceuticals, and crystalline silica. However, much more research is needed to determine the mechanisms and epidemiology linking exposures to development of SAIDs. There is considerable epidemiologic evidence supporting the hypothesis that occupational silica exposure is associated with a variety of SAIDs, including SSc, rheumatoid arthritis (RA), systemic lupus erythematosus (SLE), glomerulonephritis, and small vessel vasculitis (Koeger et al. 1995; Parks et al. 1999, 2002; Powell et al. 1999; Steenland and Goldsmith 1995). Research regarding asbestos exposure and SAIDs has been much more limited.

The small vessel vasculitis would be us.

This study in Libby Montana is referenced many times in journals: This quote might pertain to warning on mulch.:
Health effects have been detected not just in mine and processing plant workers, area lumber mill workers and loggers (from asbestos dusting of forests) and their families, but also among other Libby residents and their children. Many were exposed through ambient air or to mine tailings and other contaminated materials provided to the town by mining companies for the construction of ball fields, school running tracks, playgrounds, public buildings and facilities, as well as for private gardens and house and business insulation.

[vdub]

It looks like both studies talk about mine tailings and silica. The Libby, MT study references lumber mills, but, as I interpret it, suggests that the lumber people were exposed to silicate from the local mining industry and asbestos dusting of the road and not from by products of lumber production. Silica is pretty bad news for the human body.

I don't hear of many potters getting it, only one famous one, that I remember.

I only know of two famous potters; Annekat and Harry Potter. I haven't heard of Harry getting wegs.... :-)