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I'm not sure in which forum to post this. I know research says: to develop lupus we must have the genetic predisposition and then have a trigger. I accepted that. But... there seems to a huge percentage of people diagnosed with lupus in and around my small community in Lenawee County, MI (USA) and this raises some questions. . . at least for me.

Has anyone out there noticed high percentages of SLE in areas and done any checking to see if environmental hazards could be the trigger versus individual sun exposure, accidents, or stress?

Please let me know if you have. I'm not looking to blame this horrible disease on anyone but if there's something that can be done to protect others from being triggered... it should be done. I know too many people (family, students, friends ) in a close geographic area to not consider this.

Thank you for your time.
~chel
 

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Hi Chel,

The medical community has been looking into this for a long time. When I was first diagnosed I was entered into a study trying to find common links amongst us. As of yet it seems there are clues but no definite answers.

Similar studies have and are being done for MS. In their case they have found a higher incidence of cases the further north you live.

Take care,
Lazylegs
 

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like cancer-causing agents?

I never would have guessed region would be linked to m.s. Hmph. Interesting.

I guess I was thinking more like with cancer...the communities where it's been proven that some chemical, electrical, water contamination, etc. has been linked to causing the disease.

Don't you think it's odd that four people who live/worked on our property have been diagnosed with lupus? Me, my step-daughter, my sister, a friend that has worked here for 10 years. Then down the road less than a mile are two more women who were diagnosed with lupus. Less than 5 minutes away is the school where at least one student who graduated a year ahead of me developed sle. A male student I had at the school in 95 developed it. In Adrian (less than 20 minutes away) is a teen boy who was diagnosed at age 12. And this month a teen boy died of lupus complications in addition to an older woman who died of lupus complications within a few weeks. And those are the ones I know without working at looking for any.

Doesn't that sound like A LOT of people in a small area?

Any thoughts? Should I try to find out if there are more and where they live? Does anyone think there could be an environmental screw up going on?
 

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Hi Chel

An interesting thread. There was a study carried out in Carolina which showed some link between Lupus and exposure to Quartz but for my part I cant say I have had any such exposure.

http://www.niehs.nih.gov/research/atniehs/labs/epi/studies/cls/index.cfm

Other studies showed links to exposure to mercury and pesticides and also working environments such as healthcare and those working night shifts.

http://www.ncbi.nlm.nih.gov/pubmed/15468355?dopt=Abstract

As Lazylegs has said there is ongoing research into the cause of Lupus. My best guess is that there are a number of factors involved which have to come together. This would suggest a genetic pre-disposition and an environmental trigger. However these are only my own musings....

Hopefully some day soon a cause will be found and then its only a matter of time before a treatment is found to 'switch off' the reaction. Better still, avoidance of the cause, eh?

Take care
Joan:rose:
 

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Chel,

I, too, have often wondered just what set off my Lupus. I grew up in a small community and was in 6th grade when I was diagnosed. The stressor that I can think of at that time would have to have been making that transition from child to teenager and all that comes with that. We have all been there and gone thru those hazaedous times and if you can come out unscathed on the other side, then good job. Then during my child bearing years when most show their Lupus, mine went into hiding and I had four children. It wasn't until 2005 that I was "rediagnosed" with Lupus. My stressors then, well, I was working night shift at the hospital, raising the kids in a new city and going thru a divorce. Kinda hard there to point a finger at just one. Now I just deal day to day and hope that someone smarter than me will come along and find a cure before too many more are diagnosed. Until, I cross my fingers and say my prayers.


Nancy
 

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Coping and Hoping

Every time I hear of one more person I know who is diagnosed, I just want to cry ... no, I do cry. I appreciate the research articles that were posted.

I guess for now I should just prepare myself. As life continues to get more stressful (economically, the disolution of families, etc.) we can probably count on more people developing SLE and not less. But I wonder how many will feel horrible without being able to afford going for a dx and drugs. Then what happens? Quicker deaths? sigh.

Thank you to the proctors and managers of this site. I've been here for many years visiting but always gaining some peace and direction. Best wishes to you all as you continue your personal fights and quest for peace.

~chel
 

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There are definitely several studies and some people have investigated apparent clusters of lupus in certain communities. Here is a link to an article that is pretty close to what you are getting at...

http://www.newscientist.com/article...r-at-oilfield-points-finger-at-pollution.html

I grew up in Minnesota in a town with a very old and very dirty coal power plant. They have just now started to clean it up - I'm sure it produced a lot of mercury. In winter... near the power plant... the snow would actually turn dark with a layer of minute particles from the power plant. Other studies have been done on mice with prior exposure to mercury (deliberate) who then developed lupus, so mercury does appear to be a likely trigger or a factor that can make lupus worse.

If you are very interested... I would contact a department of public health and ask some questions about if they know who can investigate an apparent cluster of lupus cases and if they know of any University or other authority that could help investigate it and see if they can find anything.

However, you may want to read this excerpt from The Lupus Book by Dr. Wallace which contains a paragraph about apparent lupus clusters:

http://books.google.com/books?id=9v...&hl=en&sa=X&oi=book_result&resnum=4&ct=result

Hope that link works... otherwise just Google "lupus clusters" and it should pop up for you.

Interesting topic - & I hope someday some research actually leads somewhere & steps can be taken to reduce environmental triggers of lupus!
 

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This is how my unscientific head approach goes.

I read an article in the 'Times' supplement magazines today about the demise of our native 'bees' and how enviromental farming methods and pesticides were causative.

Directly or indirectly the use of chemicals in an eviroment may have an effect on health in general.

All is food for thought.

Whether somebody is compromised in some way: ie a virus or bacteria is more likely to take hold, or a predispositon, or a gene or all or some of factors plays a part: there are lots of therories.

There is also some scientific investigations of late that lean heavily on genetic factors mixed in with circumstantial triggers.

Nothing is yet certain.

The thing I was struck with reading about the demise of our 'pollenating bees' and how much the enviroment /pesticides can make such imbalances , it did raise even more questions in my mind as to whether some people are more sensitive to enviromental triggers.


Ok its all just food for thought but one day we have some answers,I reallly do hope so.
 

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Food for Thought!

Now you've got me thinking about this!

I know that I have some kind of autoimmune gene from both sides of my family and felt that my trigger was glandular fever in my teens.

I was brought up in a good residential area and had what you would call a 'safe' childhood. There were only 10 houses in our street. At the back of our house was a paint spraying factory that started up when I was around 11. I remember my Mum getting together with some of the neighbours to complain to the council as some people had suffered headaches, dizziness and rashes while in their gardens. There was also noise pollution.

This turned into a huge campaign with enviromental health officers camping out in our garden with all types of equipment. I remember it being in the press etc and the outcome was that the company hadn't fitted the correct filters and the like to dispose of the paint fumes and dampen noise pollution. Many of the neighbours had their cars and property damaged with paint flecks.

A court found that the emissions that were recorded were known carcinogenics, well above acceptable levels and very harmful to the environment. There was also concern about how they disposed of waste as we believed a nearby water stream was also contaminated - I played there constantly as a child. It cost the company a fortune to make the necessary changes and they went out of business not long after. The only substance I can remember was toluene but I'm going to ask my mum as she still has the details. Just doing a search on lupus and toluene brought up some interesting reading.

Re the Multiple Sclerosis clusters - we recently had a programme on Scottish TV which showed exactly what LazyLegs mentioned, the further north you are the more likely you are to have MS. The instances in Scotland are believed to be the highest in the world. I've attached the link to the reporter (who has MS) and the programme.

http://news.bbc.co.uk/1/hi/scotland/7508087.stm

If it applies to MS, what's to say it doesn't apply to any other disease. There are also studies going on that cancer clusters are linked to electricity pylons and mobile phone mats.

If I get any other info from my Mum then I'll come back and update. Food for thought!

Hugz,

Pam xxx
 

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The Other Illinois Tammy
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hi Chel,
I have not noticed anything in my area but that don't mean a lot only that for a long time I thought like many I was alone in the disease ( as silly as it sounds ). I have found by chatting in the chat room with people that different things seems to tigger the disease for different people. For many and most the sun is the big one. I would not be surprised to find that people working 3rd shift have more time under direct indoor light that tiggers their lupus. I could be wrong. I wonder like the disease if it is not different for everyone and that when the right factors come together for each person that it starts kicking up the lupus. Well it is an interesting question to ponder non the less. It would be nice if one of us held the answer for all of us.
 

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Discussion Starter #11
next step ?

Hi Everyone -- Wow -- you've all shared some very intriguing links!

The lupus-cluster groups paragraph made sense. I wonder how many people it takes to be a cluster worth investigating? :)

Unfortunately, or fortunately, at least three of my group have seen a nationally reknown lupus rheumatologist for our dx. I'm not sure who the other five were dx by but I'm sure it wasn't someone in the community.

Does anyone think it's worth pursuing to see if there is some chemical or problem that may be setting off the lupus gene in the area? What do you think ? Anyone? Maia?
 

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The reason M.S. if found higher in Northern States or countries is because of getting "Less" sunshine in the north or at least that is what they say. Children need more vitamin D to protect them from getting M.S. because it is determind if we will get it in childhood I have been told be the M.S. Society.

I wonder if a lack of something could cause a problem with the other autoimmune diseases? Perhaps a chemical could cause us to not make something our bodies needs? :worried:
 

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Chel, it's really hard to give an answer to your question as to whether it's worth it without knowing all the details. But if it does seem higher than that 1 per 500 quote from Dr. Wallace, then I would certainly want to pass the information along to some local experts (epidemiology department of a nearby major college or the department of public health for the state). There are also environmental organizations you could talk to....

It might make you feel better to take some action - it probably would make me feel better to know that I did something to possibly bring attention to some people that might be able to do a proper investigation. I would say go for it... you have nothing to lose and possibly something to gain.

PM me if you would like any more advice - I'd love to get an update on how things go for you as well in this endeavor. :) Good luck!
 

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Chel,
I grew up in rural Indiana, surrounded by farm fields(one actually adjoined our back yard), and have often wondered about pesticide exposure, and the fact that we had well water, the well located only feet from a frequently sprayed field. There was one other girl who lived close, she too was eventually DXD with SLE, her stepmom was DXD with MS. Also, my mom was given live polio vaccine and mmr vaccine while pregnant with me (made her pretty ill), and I wonder if that could have done something:shrug:. I would like to see in depth studies on areas where there seems to be a cluster of autoimmune DXD people.
 

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Hi Chel,

I haven't posted for a long time, I was diagnosed with Lupus about a year ago along with Fibro, Raynauds and a few other problems.

I too live in Michigan, halfway between Grand Rapids and and Lake Michigan. I know where you live because my husband calls on half of Michigan for his work and I have been with him a few times. We have also vacationed all over northern Michigan.

My parents grew up in Lucas and Mc Bain and then retired in Marion. My parents have both passed away, but my Mom was always telling me about more and more people being dx. with cancer. They all seemed to be in the same area. The thought was that maybe all the chemicals used on the farm fields had a lot to do with it. They grow a lot of corn and potatoes in that area.

You live in a beautiful area. My husband loves it when he goes "up-north" for work.

There are a lot of orchards in the northern part of Michigan. I"m sure that the chemicals used on fruit trees must have an effect on the environment.

Knowing cannot take away our SLE, but maybe it would make us feel better if we knew someone was doing something to study it.

Hope you have a pain free day. :)

Lyn, in Michigan
 

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Hi Lynn,

Yes, I too think Michigan is beautiful. Now if the economy would just come back around so people don't have to keep moving out of this state. ;)

Best wishes.
m
 

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Hi osillyme welcome to the lupus site.

This is a very old thread and I am going to close it.
Perhaps you would like to start a new thread in the introduce section.
Do you have lupus?
Take care,
Lyn
 
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