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americanmike

What Was The Environmental Spark!

52 posts in this topic

I didn't read all the responses, but my pregnancy caused my scleroderma. The doctors won't/can't confirm, but I know. My son was born in July 2005. I first went to my primary care physician with the initial complaints in Nov. 2005, but should've gone earlier. I was just attributing everything to being a new mom, tired, hormonal, etc. I was diagnosed with diffuse sclero in Feb. 2006.

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Hi Michael,

 

I wanted to chime in and say that my son (18 years old, with Downs Syndrome/Autistic) has 5 pins holding his Rt hip together. They were put in almost 4 years ago. It's an interesting question even though he has always had 'health issues' because the rheumatologist doctor said last week that since his esophagus has stopped working, he has probably had the sS for a few years. He's been on GERD meds since he was 10 but that is common in kids with Downs Syndrome due to the lack of muscle tone. He has had 8 surgeries for pilonidal cysts, three of them with him being sent home with 'marsupial wounds' that needed to heal from the inside out.

 

I guess finding the cause of Scleroderma is kind of like people trying to find the cause of autism. It use to be 1/1000 kids had autism, now it's 1/166. We have a whole generation of autistic kids. Maybe in a few years, from reading this site and the other Moms that have chimed in, we will have to add a generation of scleroderma kids, too. THAT is a SCARY thought.

 

As for my son, we are STILL waiting for dates for the CT scan and MRA of the heart. I am getting so frustrated with the medical field/insurance company. They are so slow in getting anything done!!! Is this the norm for specialists, such as gastros and rheumatologists?

Take care, Everyone.

Margaret

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We had just moved into an old victorian house in GA that we were renting while my husband finished up at the MCG... it was 6 months later that I realized the water wasn't right! We always used a glass cup to drink from so I didn't notice right away. It wasn't until I went to rinse out a small white plastic cup my oldest daughter had gotten at a restaurant I noticed a slight discoloration to the water. At that point we stopped drinking and cooking with the tap water until it was tested.

When I took it to the Water Department they tested it and a week later never heard from them so I took them another sample. They took it to be tested and again a week later I didn't hear from them. So again I took it to the Water Department and they said they thought I must be joking - I must have gotten the sample from a puddle of water on the ground not the tap water in the house. I told them to come to the house to obtain the water themselves. They did that morning by early after noon the entire front yard and part of the street was dug up to expose the water pipes.

No one at the Water department would talk to me about what was going on - except one of the techs in the yard... I was crying and pleading with him to tell me what was going on. He said when they replaced the water main 15 years ago!! they neglected to hook this house up and it was only receiving water that was being back washed in to the old pipe. I ask them what the water test showed and he said it had everything high bacteria counts of course but high metal counts too. I asked which metals and he said all of them. In something like this, one can't prove cause and effect. I did check.

My youngest daughter has scleroderma, diabetes and celiac, all autoimmune. I think it was the water. How stupid of me.

Her endo. said she believed her immune system is failing, like dominoes. I try not to dwell on the past as nothing can come out of it but I am deeply saddened and at times feel extremely guilty. I picked out the house.

I'm with you Michael, I think it was the exposure to metal... and what ever else.

Take care,

 

DAWN

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One more thing, I recently went to a seminar for parents (the main focus was juvenile diabetes) and the doctor speaking said something that I keep thinking about... he said many think the next world war will between nations but he thinks the next war will be an auto immune outbreak as all the auto immune diseases are on the rise.

 

Margaret, I have recently read a great book about special diets for special kids. If you would like, I can send you a PM with the title and author's name. I love this book it talks about it all - autism, celiac, gut permeability, food allergies, additives to food, etc. - in relationship with kids. 150 Great recipes too.

 

Night, DAWN

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hello~

I have read a lot of posts on this thread relating to pregnancy. I have to be suspicious about that one myself. I feel that I was predisposed...as they say, and the stress of my second child triggered the sclero. Up until then, i was okay.

 

I have also wondered about mercury fillings. I do have them and have read that when the filling becomes old, the tooth cracks and leaks the mercury into the body triggering/causing autoimmune disease.

 

The dentist that placed them there was a very young and talented guy, he had to retire very early because he developed such severe Rheumatory Arthritis in his hands....also an Autoimmune disease! Makes ya wonder.

 

Anyhow....very interesting thread!


*WestCoast*

 

********

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This is a very interesting thread, and I can relate to several of the possible reasons put forward.

However, just now I'm not going into it, but wanted to say that many of you may like to read the webpage on the ISN website about The History of Scleroderma

One remarkable point is that Scleroderma was first described by Hippocrates around 400 BC.

And also:
The first clear description of it was made by Dr. Carlo Curzio in the mid-1700's.


I wonder what common points these patients so long ago shared with scleroderma patients of today? Particularly way back in 400 BC!

This page also has a number of items about Paul Klee, the famous artist from the earlier 1900's, who had scleroderma.

One other point......... I wonder if the proliferation we are seeing of new scleroderma cases now comes from there being actually MORE scleroderma around, or is it because they are being diagnosed better? There may always have been scleroderma in the general populace, but it was seldom diagnosed. Instead put down to something like bad circulation, stomach problems, skin problems etc. or all of those plus more. And without the meds to alleviate many of the problems which go with scleroderma, the unfortunate patients often didn't last very long!

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Hi Sherrill and everyone,

 

It was more common to use pewter cups and dinnerware made with lead in the 1700's, which came here from Europe, not to mention that the entire water system in the ancient Roman world (and most drinking vessels) were also made of lead. Think of all the cadmium and lead Klee must have been exposed to as well!

 

I got my first two fillings in 1972, two more between 1980 and '81 and you know about the old amalgams and the debate about replacing them; I had two replaced in 2000 and 2005 and definitely got more symptoms afterwards. That's not to say it caused all the CTD's on it's own--just another trigger on top of it all. And all those dental x-rays! I'm a great night light. A lot of us broke thermometers and rolled the mercury around I bet, so don't feel alone!

 

And a few more things...two pregnancies of course, then remodeling and inhaling who knows what from a century+ old house, well water (more like ill water) for a few years at two houses, breathing in oil fumes from a dying furnace for two years (the bottoms of the white curtains were black after one winter), but the real kicker I believe was being a low birth weight baby. That's where I believe the trouble started and everything else was icing on the cake.

 

It seems that we all have a ton of things in common, but since kids are now being diagnosis'ed much more frequently, I believe it's our environment more than hormones or even a virus.

 

Take care,

Elehos

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I hate to admit this - but I used to do alot of speed (meth) prior to my diagnosis. My doctor often wondered if this played a factor in my diagnosis of Raynaud's.

 

Thankfully, I am now drug free!! I still find myself blaming "me" for getting Scleroderma/Raynaud's though. If only I would have lived a 'cleaner' life.......urghhh

 

Sakar

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Hi Sakar,

 

I've never had any desire to use any street drugs, and still have had Raynaud's and OA since childhood. We probably all have things from our pasts that worsened our condition, but there's no sense blaming yourself now--just keep clean like you're doing, and hang around here for info and support!

 

Best wishes,

Elehos

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Hi all,

Based on my medical history my mom said if it was weird I'd get it, and this was long before I was diagnosed with sclero.

For me: no drugs, pregnancy, cancer, Choctaw Indians or autoimmune diseases except for my grandma's cousin who had lupus. No metal anything in my body and all my amalgams were removed with my baby teeth so they weren't in very long. My last dentist (who I worked for) switched to electronic x-rays with a lot less radiation. And really tons of people get those x-rays done and mercury/amalgam fillings that I doubt it's a cause but maybe an instigator? If you are worried about x-rays find a dentist that uses digital x-rays. They're more accurate and less exposure.

I've had my share of chemical exposure: I may have chewed on a battery when I was a kid (gross, but I didn't know better). As an adult I ran the autoclave at the dentist office, worked with formaldyde-covered plants, and was exposed to other art related chemicals, but this was years after my hands first started turning blue.

It's all so much guessing because our disease is so rare. For me: maybe I had only Raynauds, then years later I went through a patch of anxiety & depression + all that exposure kicked it into full-fledged scleroderma. But who knows?

peanut


You can deprive the body but the soul needs chocolate

my HMO makes me wear a helmet...

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Hi Elehos,

There are so many things which *may* contribute to causing scleroderma! But the fact is that none of them in isolation seem to be the cause. It seems to require something plus something else at least, and maybe even more than that!

OK, pewter and lead drinking vessels, maybe, but in that case why didn't everyone get scleroderma, as they were probably widely used.

Pewter is an alloy of tin with various amounts of other metals in it such as antimony, copper, or lead. The *other* metals I have just referred to are probably the most dangerous. Tin is a pure metal which is extracted from ore, and of course is still widely used today.

Scleroderma is still regarded as a rare disease, and back many years ago would have been even more rare. However, this may only have been for want of an accurate diagnosis. The doctors or alchemists in those times just wouldn't have had a clue what they were dealing with!

Returning to my comments of needing more than one thing to start scleroderma: My husband and I had our own business as commercial greenhouse tomato growers. We did this for 23 years. Of course people now who hear this say what about the sprays? Shock, horror! Well, I didn't do the spraying, my husband did, and we shut up the greenhouse after that for a few days. My husband is absolutely fine, with no signs of scleroderma, so...?

Further more, my husband built several boats over the years, with of course epoxy resin included in their making. This is another *possible* in scleroderma. Shock, horror again! But he's not the one with the scleroderma!

However, I put the 10 years of stress we had prior to me developing scleroderma, as the largest factor for my illness, but once again, it would still have needed another factor as a catalyst to "set it off". This I attribute to genetic factors. My mother, I am sure, has had scleroderma most of her life, and I think her father also had it. But scleroderma was very rarely diagnosed back then. She was told she had "bad circulation". She had/has the worst Raynaud's I have ever seen! She also has always had shocking esophageal, stomach and bowel problems! When she had me she nearly died due to complete lack of elasticity in her tissues! But hey, she's 90 in April, and doesn't want a diagnosis now!

Oh, I almost forgot, my mother is an artist, and has used many types of art mediums most of her life! Just to confuse the issue! :rolleyes:

So that's the genetic factor in my family. As to the 10 years of stress, my brother-in-law contracted HIV, and subsequently died from AIDS. I had a lot to do with him in trying to help him, and believe me it was difficult! His parents couldn't handle it at all and his father had a heart attack at 67 and died a year later from a stroke. His mother then got lymphoma, and died nearly 3 years later. All through this I was very involved. Then my father got cancer and died, and we had a complete change of business, shortly after retiring.

I became ill about 9 months after all this, though I strongly suspect that I was germinating the scleroderma for some years prior. Certainly if the overwhelming fatigue was anything to go by!!

However, I once more reiterate that my husband stayed healthy, although all this was just as hard on him. We "scleroderma-ites' seem to be quite an elite bunch don't we?

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I lived at an altitude of 7500 above sea level when I was diagnosed and when I first started getting symptoms. I came down with diffuse sclero after a bout in Mexico. Guess I got ran down or something, who knows. I think the altitude has something to do with perhaps. I know three others in that town, population around 7000, that have scleroderma. There are more, but I know of three.

It's cold there too, which certainly does not help Raynauds. I've been better since moving to Arkansas, but I am actually moving back to Denver in a few months.

Jennifer

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Hi Sherrill,

 

When you look at life expectancy rates until the mid 20th century, I think a lot of people supposedly died of "old age" when it wasn't just a natural aging process, but the air and water were much cleaner centuries ago. The metals in pewter weren't good for you, and it was phased out after the Colonial period in favor of imported items--china looked better than dull gray plates for starters. It's also odd to think that you could be middle aged by 24 in the 18th and 19th centuries, but overall life expectancy was lower in those days for most.

 

No, not everyone got sick, but not every smoker gets cancer, has heart attacks, or strokes either and you know the doctors opinion about that. I mention that because the only ones in my family (immediate and extended) that have had any serious health issues or died young were life long non-smokers. The smokers were all healthy and lived into their mid to late 80's. No one get any ideas here! It's just to point out that while certain people are affected by toxins, some might respond differently.

 

And if scleroderma was considered primarily a "woman's disease" in the mind of many of the male doctors centuries ago, how many undocumented cases were there?

 

Best to you,

Elehos

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Jennifer, I hope your move goes smoothly. Well, at least you waited to move until after they got most of the countrys accumulation of snow. Is this where your parents and family live? Colorado is beautiful (in the summer) yes siree. Sheryl


Strength and Warmth,

Sheryl

 

Sheryl Doom

ISN Support Specialist

(Retired) ISN Chat Moderator

International Scleroderma Network (ISN)

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Jennifer,

I live right at the mile high marker in Albuquerque and I do know that the altitude affects my lungs. When I go higher, I can't breathe, but whenever I go to sea level, I breathe so much better and I don't get near SOB. Oh Well - I love living here and wouldn't live any where else. Right now we're still digging out of the 16 inches of snow we got last week and they are saying more snow tonight. It's beautiful!!! The kids have had off all week so they have been sledding every day in the park across the street. I love sitting at my computer listening to the little girls screaming as they go down the hills. Nothing like a little girl's "fun scream."

 

I hope you have a safe and not too tiring move back to Denver. I hope it doesn't have too much of an effect on your health.

 

Big Hugs,

Janey


Janey Willis

ISN Support Specialist

(Retired) ISN Assistant Webmaster

(Retired) ISN News Director

(Retired) ISN Technical Writer for Training Manuals

International Scleroderma Network (ISN)

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I am moving back to Denver to marry the man I left behind five months ago, to move to a lower altitude and be with my family in Arkansas. I miss him too much and so the love story goes, I went back to Denver last weekend and came home engaged. I have no doubt it's going to be harder on me but I'll just have to use more supplemental oxygen. drag...but in the name of love I will do it. Yes, it's snowing again there...and the summers are fantastic...all five months.

thanks,

Jennifer

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If people get this disease after being sick or tired and run down. If you are a child and sick alot had maybe tonsils and adnoides out and dental work is done, could that be where ours orinigated. A couple surgeries on top of being run down in the first place. Are we getting hotter. I don't think so. But, we have to go thru what happens to the kids up until they are diagnosed I would think. It could be so simple and everyone is overlooking it. Where is our think tank? Sheryl


Strength and Warmth,

Sheryl

 

Sheryl Doom

ISN Support Specialist

(Retired) ISN Chat Moderator

International Scleroderma Network (ISN)

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Hi Jennifer,

 

Congratulations on your engagement! That is so wonderful. I do hope your move goes smoothly and you are able to re-aclimate to Denver's weather without too much difficulty.

 

Warm wishes,

Heidi

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Hi Sheryl,

 

As I understand it, there are only a very few children who have the systemic form of scleroderma. The vast majority of them have localized scleroderma (morphea and linear), which is very different in many ways from systemic. It primarily affects the skin, and for the large part lacks internal organ involvement.

 

Oddly, scleroderma affects children equally until about 8 years of age, whereupon it predominantly affects females. That is mentioned in our most recent book, Voices of Scleroderma, Vol. 3.

 

There has been a lot of research done into causes of scleroderma, and as I mentioned a lot earlier in this thread, we have dozens of pages on it, beginning at Causes of Scleroderma.

 

A few of the causes are definitive. I think part of the difficulty is that many of us have been exposed to many things which could adversely affect our immune system, which makes things even more difficult to pin down. And there may be many different causes, too.


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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As far as cause goes in my case I think predisposition, I had severe mono at 17, Raynauds came in '95, major stress for 2 years, '99-'01....during and after those 2 years, the symptoms of sclero and other diseases started "coming out". Didn't go to dr. about any of it until '04.

 

Since these diseases have changed the ideas and "dreams" I/we had for the 50's and beyond years of our lives, I am as concerned about trying to fight them back and be an example to my children and grandchildren. Life does not have to end or become second rate because of a "diagnosis" or two or three or......

 

It will be different. But I am really working on adapting my ideas and attitudes and ways of thinking. I don't want to come off like a Pollyanna. It is not easy. I get ticked off about it. I get sad. I get depressed. But I also believe that I was not meant to live as a big cry baby. So, I eventually find a way to get off the pity pot and back at it again. I don't want to be remembered as a martyr, or a "brave" woman, or anything exceptional. Just as a mom and grandma and wife who loved her family and enjoyed spending time with them and laughing and having fun.

 

In other words, the same way I would be remembered if didn't have a diagnosis or 2 or 3 or.....

 

So while it may be important for the researchers etc to find the causes and the triggers etc, for me right now, I'm putting my energy into finding the right way for me to manage my symmptoms so I can live a happy life.

 

Happy New Year!

 

xoxo emmie

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Congrats Jennifer on getting married. I wish you years and years of health and happiness.

 

Hugs,

Patty


Hugs,

Patty

 

If Life hands you lemons, make lemonade.

 

Hashimoto's thyroiditis, Limited scleroderma, Dermatomyositis. Diastolic Dysfunction, dysphagia, Fibro, restless leg. Lupus is a maybe.

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Hi Emmie,

 

You certainly don't sound like a Pollyanna, and the only thing you can do with all the CTD's is fight tooth and nail. I've been doing it for decades as well, but simply became annoyed with the "happy-think everything away" mentality that could pop up. A postitive attitude is one thing, denial is another, and it sounds like you've got your head on the right way, Lady! I think you'll be remembered exactly the way you want to, not just with your family, but with all of us.

 

Shelley summed it up well with saying that it could be a variety of factors affecting our immune systems, and after reading the posts, it doesn't seem like it's a simple thing we're overlooking at this point. Mono seems to come up a lot, and it would be great if we found one or two particular viruses and nailed them, but so far the medical world doesn't seem to be looking in that direction.

 

Hugs and best wishes to you,

Elehos

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Hi, This is a really interesting thread. Oh, and I'm another who played with mercury as a child. lol

I believe my illness started from an e-coli infection. My father initially had contracted it from another person and I had a mild case of it from him. It eventually killed him after 5 years when one thing after another shut down. It was a very stressful time, looking after him and small children. It wasn't long after, that I started with joint pain and fatigue. We also have quite a family history of autoimmune disease with aunts and grandparents including rheumatoid arthritis, lupus, type 1 diabetes, graves disease and vasculitis. I also have a familial osteoarthritis that all the women in my family have including my teenage daugher.That I know is in the genes.

Hugs, Piper

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