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razz

Scleroderma Causes

66 posts in this topic

What about PVC? I don't know how much exposure you have to have, but I had read the polyvinyl chloride thing before & blew it off thinking I'd never been exposed to chemicals I don't think... BUT I worked for a few years in a auto factory, making visors which are... PVC. Putting them together & heat sealing them... I quit that job 12 years ago, could that make a difference <10 years after the fact (when this all started)?

 

I worked with those plus in the other part of the building (not closed off from my side) was "molding" where they made all the plastic parts. I also worked with the cardboard like visors which were sealed with heat & some glue I think...can't recall. And lastly I put together tons of the vanities that go in visors.

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luvbnmom3,

 

I was going to mention PVC too. I have great fears about PVC. I almost fear that PVC will become the asbestos of the future. My mom who has scleroderma was the managing director of PVC door and window manufacturing company (as was my father - dad's cancer was also linked to PVC). My mom's doctor has another scleroderma patient ... she worked in the admin office of a PVC injection moulding company and would be exposed to the smell of PVC vapours all day every day.

 

My feeling is that the exposure to certain chemicals, such as PVC, trigger something in the body and then all it takes is some other stimulus such as severe stress or a fall to really bring this disease to life.

 

I wish we knew for sure though :-(

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Hello all! I've been out of commission and am just catching up on the posts. I too believe stress played a part in my illnes. I often wonder if my exposure to some mold in an apartment I was living in helped in some way too. I also grew up in an area where there were phosphate mines. There are many people who lived and still live in the community who have developed varying autoimmune disorders. It makes you wonder. :blink:


I may have Scleroderma, but Scleroderma doesn't have me!

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Wow I just read a few more of the posts (thought I'd read them all before the first post). It's amazing some of the similaritites:

 

CraigR - My father was a Vietnam vet and it is believed that he was affected from agent orange. He ended up developing non-hodgkin's lymphoma and passed from it in 2000. He was able to receive full military benefits as a result so we were greatful for that, but it was a hard thing to watch him progress with that disease.

 

Tru/KarenLee - I too had many bouts with strep as a child. I had it so much one fall/winter that I ended up with pneumonia and couldn't take the normal course of antibiotics because I'd had too much with the strep!


I may have Scleroderma, but Scleroderma doesn't have me!

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So basically it's sort of the same theory as nature vs. nurture. One can have a predisposition, but never become ill, where as another may have the same predisposition, and under the right (or wrong) circumstances become ill.

 

It's interesting to ponder theory and read all the different accounts people have shared. Would be nice to know for sure one day. At least I hope so in my lifetime.

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I think for me I was more likely to get Scleroderma because both of my grandmothers suffer from it also. My rheumatologist told it was more likely for me to have than not. At the time I developed Raynauds I had had a bad sinus infection and had extra stress. We put a lot of time and effort into running a Haunted Forest attraction in our area. I think the combination of those 2 is what caused me to crash so bad so fast. It's interesting to hear everyones stories. ;)

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We have a section on possible links between mercury exposure and autoimmune diseases. Causes of Scleroderma: Mercury Exposure (Dental Amalgam).

 

I'd asked my dentist about whether removing the mercury amalgam fillings that I have was a good idea or not. He said that when left in situ the fillings are stable and unlikely to be contributing to on-going exposure, but that removing them would provide new exposure because of drilling them out. I didn't say that very well, but the gist is there. I've left mine until they've needed to be replaced because they're failing due to age. Like most things, it's a matter of personal choice.


Jeannie McClelland

(Retired) ISN Director of Support Services

(Retired) ISN Sclero Forums Manager

(Retired) ISN Blog Manager

(Retired) ISN Assistant News Guide

(Retired) ISN Artist

International Scleroderma Network

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I had a whole mouthful of mercury, thanks to dry mouth for decades and I had dozens of cavities before drinking water was routinely flouridated. I'm also allergic to thimerisol (the active ingredient of which is mercury).

 

A few years ago I had to have extensive dental work done throughout all my remaining teeth. So I opted to have my dentist remove all my mercury fillings while she was in there. That renovation took about a year and a half.

 

I really can't say it improved my health at all, but my teeth look better. Also, since the party line is that dental fillings do not cause health problems, I was not able to have them removed by telling my dentist I was concerned for health reasons including my mercury allergy. However when I said I wanted them removed to improve my appearance then it was all systems go.

 

And after I had the work completed, my internist congratulated me and said it may have been one of the best things I could do for my health. Just a few weeks prior there was some study released which I think loosened her tongue as until then she appeared to be biting it.

 

But, I do think I've had substantial health improvements due to identifying and eliminating food sensitivities, most especially gluten, which is now finally emerging in studies to be a common issue -- complication or cause -- with scleroderma and many other autoimmune diseases.

 

I'm also tuberculin positive and have had some environmental toxin exposures. However, I figured there wasn't anything more I could do about being a tuberculosis carrier nor could I wipe out past toxic exposures. But I could remove the mercury (at some risk but also risk of leaving it there) and I could even more safely remove all traces of gluten from my diet.

 

So, you do what you can, depending on what you or your doctors figure might be possible triggers. I also actively address issues of stress since I want to put mind/body factors in my favor. That leaves me free to indulge in beautiful music, deep breathing exercises, healthful delicious foods, plus art - sewing - craft "therapy".

 

Since there is still no absolute single cause of scleroderma identified, most of us might be suspicious of a few possible causes but hard put to prove it in our individual circumstance.


Warm Hugs,

 

Shelley Ensz

Founder and President

International Scleroderma Network (ISN)

Hotline and Donations: 1-800-564-7099

 

The most important thing in the world to know about scleroderma is sclero.org.

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Hello.

 

I had epilepsy with grand mal seizures from the time I was a baby until puberty. I took tridione and dilantin 3x a day. Thank goodness it went away.

 

I developed Raynaud's in my early 30's, and in my 40's it went into remission. Of course, I was careful to stay warm, but I never had an attack until after being diagnosed with sclero.

 

During menopause I had hypothyroidism.

 

I am not and was not under any stress when the sclero hit. I am a fitness instructor and my diet is excellent. I am not and was not around any toxins or chemicals that I know of. The sclero came into my life disguised first as carpal tunnel, dental infection/arthritis of the jaw, swollen finger joints, and swollen and pigmented feet.

 

When I thought it was just carpal tunnel, that was taken care of by my orthopedist. My oral surgeon took care of the dental work when I thought it was just dental. But the joints and pain needed further investigation. That's where my rheumatologist came in, and she was right on target with her preliminary diagnosis of scleroderma.

 

Epilepsy, Raynaud's, and now Sclero. Has it been lurking inside me all of this time waiting to pounce like a roaring lion?

 

Who knows?

 

Regards,

HONEY

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Hi everyone!

 

I am glad to see this post brought up again because it is a question I still wonder about on occasion. Dental work involving amalgam metal fillings (with mercury) has always been of interest to me since I did have extensive dental work the year prior to my first symptoms. I had a root canal procedure done along with fillings, which I've also read could be a potential cause. I have considered replacing my metal fillings but chose to leave them in because of the cost. Instead when I require additional fillings, I ask for the porcelain/ceramic fillings. I found a dentist who does amazing work within the small confines of my mouth and just had two ceramic fillings put in recently. So far I'm very happy with her work! The ceramic fillings look better, are more expensive but at least I don't have the thought in the back of my mind of possible mercury leaking into my system.

 

I do make a point to stay away from products or locations with strong fumes or chemicals. When I clean my house, I use a very small amount of a cleaning product. Thank goodness for all the environmental awareness on using healthier substitutions as household cleaning products. There is so much we can learn about living in a healthier environment.

 

Take care!

Razz


Live well, Laugh often, Love much

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I think my genes and weakening of my whole system when I was stuck in hospital for 10 months with a huge benign growth on my tail bone in my teen years. Right after that fatigue and joint pain started. I strongly believe in the microchomerism theory as well.

 

I was also thinking whether there is a connection between being born to an older mother (40 +) and genetic defects/mutations favoring the scleroderma phenotype.

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Hiya Razz and all my buddies,

 

What a very interesting and enlightening thread. My doctor, who does tons of research and goes everywhere in the world for sclero conferences, tells me that there IS some kind of predisposition, they just haven't found it yet. Then something, perhaps a virus we didn't even know we had, triggers it.

In my case I do believe stress was involved. And I was the owner of a ceramic studio and used glazes with silica. Who knows? We have to wonder. My doctor also told me that he has a 'cluster' (his word) of sclero patients who all live in the same neighborhood where I grew up. One day when he has a spare intern he says he'll order a study.

 

Your posts on dental amalgam also perked up my ears being a dental professional for 20+ years. Everything I have learned tells us that it is better leaving the amalgam in place rather than removing it. All dental offices have to follow very strict guidelines on the disposal of amalgam these days. If you go to a reputable, ethical dental professional you are in good hands. Amalgam removal was a hot buzz in the 90's and we saw a large influx of people who wanted their amalgam removed for various reasons, MS patients, RA patients, etc.

 

In my years, I have never seen one person whose symptoms have been relieved nor have I heard of or read any studies which confirmed any relief. My boss served as president of the council on dental education so believe me, we were in the loop.

 

Additionally, my doctors were wary of amalgam removal with no justifiable medical reason, especially since it re-exposes the patient! So yes, if you said you wanted it done for cosmetic reasons, you had to sign an agreement that the treatment was rendered at your request and was not recommended because of decay. Remember dentists have to protect themselves from liability if someone says their amalgam removal made their symptoms worse.

 

People have enough anxiety about their teeth without making things worse. I personally have amalgam in my mouth and believe it is the best restorative material in some cases where bonded (white) fillings just aren't strong enough.

 

There will always be controversy surrounding amalgam, and my advice in any situation is to find the best dentist you can and be secure that he or she is well educated and ethical, and follow their advice. Never, ever shop for price where your teeth are concerned. I always want to know where they are 'saving' money and hope it is not in the sterilization area, or patient or staff safety.

 

Peace out!

Mary in Philly


Diffuse sclero; diabetes; hypertension; GERD with Barrett's

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Hello All

 

I've just read some of the newer posts to this topic.

 

I've not heard of Microchimerism before so just read what it says "refers to the presence of foreign cells in one's body or the harboring a small number of cells or DNA from a genetically different individual". Is this referring to pregnancy or when someone absorbs their twin in utero? I'm now going to check my twin for missing parts, if I've got them she ain't getting them back as revenge for the poor, hapless, naked fashion dolls that fell wounded as a result of our childhood arguments.

 

Take care.

 

Amanda


Amanda Thorpe

ISN Sclero Forums Senior Support Specialist

ISN Video Presentations Manager

ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist

International Scleroderma Network (ISN)

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I laughed when I read your post, Amanda. I am pretty sure you were just kidding, but just to clarify, I believe microchimerism refers to fetal cells. On the same page Eos linked to (Fetal Cells and Scleroderma) is this article:

 

Mothers And Offspring Can Share Cells Throughout Life. Cutting the umbilical cord doesn’t necessarily sever the physical link between mother and child. Many cells pass back and forth between the mother and fetus during pregnancy and can be detected in the tissues and organs of both even decades later. ScienceDaily. 05/08/08.

 

They may never call or write, but somehow they always stay with you! :D


Warm wishes,

Jefa

 

Carrie Maddoux

(Retired)ISN Sclero Forums Support Specialist

(Retired)ISN Sclero Forums UK Chat Host

International Scleroderma Network (ISN)

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I also developed sclero symptoms approx 5 months after having a baby...


Shennen

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Amanda,

 

There is a study of twins where the link of fetal cells passed from one to the other is the possible cause of scleroderma. I'm not sure of the study's name. I find the microchimerism theory very interesting too.

 

Hugs,

Razz


Live well, Laugh often, Love much

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