Sarcoidosis Expert Regarding Enviromental Factors

ladysten
0 Recommendations

I need to find a sarcoidosis expert who is willing to discuss enviromental factors concerning a building I worked in. Out of 135-150 people there are 6 confirmed cases of sarcoidosis and two other cases that we have just been made aware of. We have complained about the building for 14 plus years to no avail. They are now going to relocate employees and revamp the building. Is there someone out there that can look at the studies they have done on the building, the surveys and the enviromental factors and say yes it is my expert opinion that under these circumstances the envirmental factors in the building have caused 8 out of the 135-150 employees sarcodiosis. Or at least be willing to discuss this? Please advise.

21 replies

cocoa

WOW! Is this scary or what! Cleveland Clinic has a Sarcoidosis Clinic. My hubby and I attended a conference there August 2005 and they gave evidence (common factors) of external/environmental factors that many sarcoidosis patients have in common. Maybe someone there could be of assistance. They have a web site for the Sarcoidosis Center of Excellence it's called. Keep us informed.

Bonnie5

What kind of enviromental factors? I am curious because I worked at a school which was infested with mold. It would be interesting to find out if the mold at the school had anything to do with my case.
Keep me infomed!
Bonnie

Sharonah

It would be interesting to know how many Sarcoidosis sufferers are working or have in the past worked in the Airline Industry, as Pilots, Cabin Crew or Engineers.
Does anyone have any knowledge of any research being done into this?

Pohl

Hi Cocoa,

I was born and raised in an area that was very polluted by the iron, steel and chemical manufacturing industries - less than 1 km from my home. The suspision is that, just like asbestos, the environment may have had an influence on the sarcoid either as a trigger or as a cause. having said that myself and a sibling were both diagnosed withh sarcoid - little know off in SA - the general populace just stare blankly and generally confuse it with Aids. Alas, I digress...in this cade genetics and environment present...

Cause for some speculation I guess, I dont believe in coincidence.

Capalbo

I too, am convinced that the environement has something to do with triggering Sarcoidosis. My husband who has this disease worked for a printing company for 10 yrs. He cut large stock paper down into business card size stock, which generated fine particles of dust, along with the ink from the cards. Unfortunately he cut this paper stock without wearing a mask, (none required.) Before he was laid off, he was always very healthy & outgoing. He didn't even get colds or flu's. Three years after he was laid off, he began having a constant cough, swelling in his legs, sore red, light sensitive eyes, and extreme fatique. I finally convinced him to see a doctor, who sent him for a biopsy, which came back with a diagnosis of sarcoidosis.
No one else in his family has health issues as such.

I wish that I could find out if any other employees who worked in that environment became ill with any related conditions. He has been under treatment for the past 5 years, for chronic Sarcoidosis health related issues.

Through faith, I will keep reading and anticipating a breakthrough of information...

Dawn1973

My Doc believes but cannot prove that My Sarcoidosis may have been caused by a toxic black mold. My Mother Recently died of COPD and over the years I had spent a lot of time caring for her. She had her roof replaced about 10 years ago and the people who did her roof did a really bad job. It still had leaks but we did not know for quite a while as the water was getting absorbed into the insulation. After several more years she started seeing water damage signs on her ceilings. The guy came back and patched her roof. My mothers condition kept worsening though. She had pneumonia constantly and at that point once she was released from the hospital I would bring her to my house to finish recovering as it got to be too much for me with 3 kids always going to her place. (at this time I was unaware that I had Sarcoidosis). She would recover at my house, be up and helping out around the house and ready to go home, but every time I'd send her home she'd get really sick again. Finally after sending her home one time, I called the next day and she felt ok but a little tired, So I called again the next day and got no answer. I drove over there and found her almost dead. Called an ambulance after cleaning her up and got her to the hospital again. It was at this time that I began wondering about the house. Sure enough, it was infested with toxic black mold. I ended up having to sell the house really cheap to a contractor who could gut it and demold as neither of us could afford to do this and had her move in with me. I had to get all of her stuff moved out of the house.(most of it had to be disposed of so as not to infect my home too.) The doc believes that this is what caused her COPD and most likely my Sarcoidosis. However, there is no proof. So yes, Bonnie, I would say that the mold at school could be the cause but you may never know. Good luck.

Tammywehmeyer

I would be interested in hearing the results if you get someone to look at them. I am thinking that you might be a Vermont State Employee or were. I am a current one that works in the Waterbury State office complex and have been diagnosed with sarcoidosis. I too was trying to find any common denomonator and was curious if there were any other confirmed cases in the Waterbury complex as there was in Bennington. But I am not sure how to go about doing that. I tried to report it to the Health Department but they said they only are concerned with the cluster ones and that if I found out more than one person on the complex or in one of these older buildings has it then they might be interested, but now I am at a loss, I have no idea how to go about finding out if someone else here has it? Any suggestions would be appreciated.

RuthfromOz

I'm also keen for further discussion and investigation of any possible environmental triggers for sarcoid.

When I was first diagnosed I had been working for 4 years in the transport industry, in a large enclosed shed with diesel trucks driving in and out all day. From the time of my diagnosis I have tended to think that the diesel exhaust fumes that I inhaled during that time may have had something to do with me developing sarcoid.


I also grew up in a coal mining town set in a deep valley, with everyone burning coal for heating, etc. so the air I was breathing from mid-childhood to my 30s was heavily polluted with coal smoke tinged with diesel exhaust from trucks hauling coal out of the valley. I know that whenever I go back there now to visit family I have a lot of problems with my breathing, and winter visits have become out of the question.

Has anyone else seen any possible link with either coal smoke or diesel exhaust? It certainly seems that for some of us there has been more than just a hint of exposure to airborne particles of one type or another.

dmcadams

I was diognosed with sarcoid of the lungs in 2000, I have sarcoidneuropathy with cronic pain in my feet, legs, and hands which first apppeared in 2004. At this time I can only wear a certain type of tennis shoe and am not able to drive or work due to the pain and side effects of the Lyrica I am taking. Just typing this is painful. My office ,I used from 1996 to 2002 ,at a bank I work for was recently remediated for mold. The environmental expert was vague when we approached him as to what type of mold they found, however, the remediation manager was very forthcoming. Why? because he had to know what mold was there so he could advise his crew to wear hasmat protective gear if needed (which they did). He indicated that there was "black mold". When we asked the environmentalist specifically about this he denied it but when we told him that the remediation company said there was evidence he responded "maybe there is". My allergists, of which there were four, just assumed that since I worked for a bank that this was not a hazardous work environment. One of several assistants I had during this time started complaining about headaces, neck pain and cronic fatigue. After steady visits to allergists, chiropractors, acupunctureists, and doctors, over a period of two years ,she had to quit. Three months later she found out she had breast cancer and had a masectomy. Many others have had varying degrees of problems. I just read the book "Mold Warriors" that I highly recommend. In it you will find references to several doctors. The author is Dr. Ritchie C. Shoemaker, MD. with a forward by Bianca Jagger , his patiient. Another forward is by Richard Lipsey, PhD who is an expert witness and toxicologist from Jacksonville, Fl. The book was published in 2004 so i am trying to find new sources of help.

Lilaclover

I'm from the UK and was first diagnosed with Sarcoidosis 15 years ago - I have suffered ill-health of varying types since then. It first presented with dark lumps on my wrists and ankles, incredible joint pain and of course, the debilitating fatigue! The cough came much later, but wasn't really an issue. It tooks months of recovery and bottles of painkillers but finally there was light at the end of the tunnel when the illness all but diappeared.

At the time, I was living in a black mould-infested house and working in a garden centre where they sold diesel and petrol-fuelled ride-on mowers and quad bikes that they used to move outside daily - I used to complain about the fumes but my employer was not interested!

I now firmly believe that this fumey work environment and also my mouldy (excuse English spelling of this word), damp house BOTH contributed to me contracting this illness, but cannot obviously prove it.

Not long after being diagnosed with Sarcoidosis, I was also diagnosed with Diabetes - does anyone know of any link? I now also suffer with Depression.

I would be really grateful to hear from anyone on this matter. Thanks.

quincycat

My guess is that you are one of the affected workers from the Vermont state office building, and so would suggest you contact Jeff Berman who runs the Sarcoidosis Clinic at Boston Medical Center. I know he is familiar and interested in the story from Vermont. Plus at the Boston Medical Center campus is the BU School of Public Health, where the Dept of Epidemiology would likely be interested in better understanding this cluster. I know the state is publishing their findings from their analyses, but I am assuming you would like an independent opinion. Best of luck. We can learn a great deal about the triggers of Sarcoidosis if folks invest time to understand outbreaks and clusters such as this.

parwrs_59

I too working for a major printing area for 10 years. I was in sales but still the smell of the ink, varnish and dust from cuttings came upstairs and it always bothered my allergies. I didn't work in that location, but was there about two days a week and I always came away with a headache and nausea.

retiredarmynurse

How was your sarcoid neuropathy diagnosed? When i had my lung biopsy back in 1983 they found silica particles in my lungs. i had worked in a motor pool.

kashi

Wow! This is confusing...mostly because there is another discussion board out there where everone swears it is genetic. OK, there may be a trigger that has an environmental factor, but that people with sarcoidosis have a genetic predisposition. Everyone posting on this thread seems to believe the opposite.

I was told mine was due to my Swedish heritage. I have never worked around hazardous materials. I have not been exposed to mold (as far as I know!) and I have had a rockstar immune system most of my life. I have traveled extensively abroad and have wondered if being exposed to new bacterias had any effect.

But I have found some publications (http://www.wasogupdate.com/access.html) that show exactly what gene is responsible for Lofgren's Syndrome. The researchers said they were hoping this will pave the way to helping understand other forms of sarcoidosis.

I had a lung biopsy done and my doctor said there was no way to isolate what bacteria had caused the granulomas.

Deb6

Hello Sharonah
I am a Flight Attendant but was not in this industry when I became ill. I believe mold exposure triggered my first flare and recently, 15 years later now hit with a second flare where I was finally Dx'd with Sarcoid. I too am curious about my current occupation and if there is any relationship to the Sarcoid.

leonabertha

Hi,

I'm not surprised! I've wondered the same thing when I was diagnosed last year. I work in a building that is 100+ years old and has been through some major floods. I would start having symptoms at work and nowhere else. I suggested many times getting the air vents cleaned. Of course, because of the costs, it was totally dismissed. Just think, if they did find there was a lot of mold and it had caused all these medical problems, there would probably be some lawsuits. They certainly wouldn't want to open themselves up to that. There have been many people sick with different problems in the nine years I've been there. But still, no one seems to think that mold could be the problem. If I would push the issue, I'm sure they would suggest I find another job. So what does a person do? Most people can't up and quit their jobs. Especially when they are already sick and need their health insurance and possibly their disability down the road. Keep us updated. Thanks!

blondinette_27

I am a member of another sarcoidosis community and someone posted a letter from a pathologist..Having a yound child affected with this disease, I am as concerned as you are regarding possible causes of sarcoidosis.

Here is the link http://www.afip.org/Departments/Endocrine/index.html#, however if it does not work, do a google search on Dennis K. Heffner M.D, along with the word sarcoidosis. It is very interesting.

BobWalter

Hi Ruth,

I was dx'd in February 07 with sarciod in my lymph nodes in my chest. I also have other minor symptoms (improving cough, improving joint pain, fatigue, night sweats, etc.). I am 62 years old and just retired from driving diesel trucks (18 wheelers) in Sept 2005. We fueled our own trucks, normaly on a daily basis so I was always breathing the raw diesel fumes or the diesel exhaust fumes. By law truck drivers can work 70 hours per week so in my 19 years of full time driving I breathed a lot of diesel fumes. Also, no matter what you hear working long hours around the clock, it has to reak havoc with you body's ability to ward off illness. I am taking a low dose of prednisone at this time (for one month), and some other supplements to cleanse and improve my immune system. In the last month I have seen some improvement but will know more when I go to the doctor again on the 11th of July. It would be interesting to see what commonalitys we have, if any, so a treatment may be found. Also any meds or any over the counter supplements which improve/cure our illness would be wonderful. Keep up the posts, we can all learn from each other.

Bob
Idaho

Freespirit1953

My son was dx with sarcoidosis about 2 years ago. It was affecting his lungs. Took a pulmo dr. to find out what was wrong with him. (I suspect he had it for quite awhile..hindsite is 20/20
My daughter has suffered with IBS for several years and last year had problems with her lungs. She questioned the dr about sarco..he told her no way. To make a long story..after she was "on the mend" he ran the ACE(?) test and it was positive... She was very ill for a couple months.
I also suffer from many of these sx but it goes away so I have not done anything about it.
There is no history of this in our family.
However...we live on the border of an EPA superfund site..TCE,benzene and lots of other nice chemicals were in the water supply and also inhaled via water(showers) and air. I have no doubt that this contributed to sarcoidosis in my kids .Question is how to prove. TCE is SOO common in water the EPA has kicked up acceptable levels...

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