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Biomarker for Diffuse Scleroderma skin has been discovered!


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No one knows what causes scleroderma?


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#1 NorthStarHope

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Posted 18 November 2010 - 12:37 PM

I'm just so confused at this present time, being that my world has turned upside down and has led me to do some research on scleroderma.

I just can't seem to understand why some say that there is no known cause and no known cure. I hope it is okay for me to write a bit about what I have found out during months of research of my own.

I have found that vinyl chloride, is a toxic substance and if inhaled or absorbed in skin can cause scleroderma. If its burned it is very toxic. Well I could go on a bit, but I do not want to overstep my boundaries.

Maybe there are other people out there that are as confused as I am, and hopefully someone somewhere will find a cure!

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#2 Shelley Ensz

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Posted 18 November 2010 - 01:18 PM

Hi NorthStarHope,

We have huge sections on our main site about Treatments and Clinical Trials for Scleroderma and about Causes of Scleroderma. As you'll see, there's a huge array of known causes plus a good variety of suspected causes, as well. Most of the time, the cause remains unknown in individual cases, except where there is a clear connection with occupational exposure to certain toxins.

Most of us find that we have multiple possible causes of scleroderma, which makes it impossible to pinpoint an exact one. Luckily, our fabulous News Team tracks all the breaking news about scleroderma, every day, to keep us leader of the pack as to possible new treatments, as well as potential causes of scleroderma.

I agree, that it is sad, though, that there is no cure for scleroderma yet, and that the cause(s) remain largely unknown. A great way to tackle scleroderma is to collect donations this holiday season for our nonprofit International Scleroderma Network. We tackle scleroderma more cost-effectively than any similar organization because of our exceptionally heavy reliance on superb volunteers. So everyone can help turn sadness to joy in knowing they are doing something to change the world of scleroderma by donating now.

This ad for our sclero nonprofit was brought to you free of charge! :lol:
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.

#3 janey

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Posted 18 November 2010 - 02:47 PM

NorthStarHope,

I think that most of us are frustrated and confused about them not knowing the cause or causes for scleroderma. As Shelley pointed out, the are several known causes and many more suspected triggers. Norrowing it down to just one to two is virtually impossible. Just like many other diseases like cancer, lupus and MS, specific causes are unknown. Some people carry specific genes that have been associated with certain diseases, but it could take an external trigger to make those genes active causing the person to actually get the disease. Without a trigger, the genes could exist, but the disease stay dormant. What the external triggers are that activate a gene can vary from person to person. So yes - it's quite frustrating, but progress is definitely being made. We now have new diagnostic tools that are helping our medical researchers get closer and closer to finding causes, penning down precise treatments and even possibly cures for many diseases. Hopefully, scleroderma is one of those diseases being researched.
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#4 miocean

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Posted 18 November 2010 - 03:42 PM

Unfortunately, most diseases have unknown causes and no known cure. In working with sick children, I am amazed at the diseases I never heard of and that have no cure. My father died from lung cancer in 1971 and we felt for sure if he had just lived longer there would be a cure but even with all the billions of dollars poured into cancer research there still is none.

There is more awareness of scleroderma now, and by talking openly about it you can create more. I know while I was very sick, I didn't want to talk about my disease, I was in denial and wanted to portray that everything was fine. Now that I am feeling better, thanks to the gift of a kidney, I speak about it. I don't go into details to bore people with my medical history and I focus on the positive. (Thanks Amanda, you are one of the BEST at that!) One of the most frustrating things for me is the damage to my hands. I was an artist and a teacher and now have trouble holding a pen. My handwriting has become better over the past couple of years, but if I have trouble doing something, like opening a bottle, and need to ask for help, I will tell them I have bad hands because of scleroderma and need help. I don't go any further unless they respond. Many will say, oh, I've heard of that and want to know more, or what is that, or nothing. I follow their lead and give more information if needed. I will say I've had a kidney transplant and many are interested in that. I will tell them about scleroderma to inform them of both the disease and organ donation.

This forum is the best place for information and support. As we know reading the internet can scare you. (Of course with us, that's an ongoing GI issue :VeryHappy: ). I thought I was going to die 6 years ago and here I am. So help out. Have enough stuff? Ask for a donation to ISN for a special occasion.

And if you can't do anything, are too sick, or financially strapped, take part in the forum. I lurked for months before signing up. It was my first foray into forums, I was afraid that my privacy would be invaded, and I was afraid to share. We all help each other, whether we have the disease, have a relative with the disease, or are caregivers. Keep asking questions.

And thank you all for being there for me and everyone else!

miocean
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#5 miocean

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Posted 18 November 2010 - 04:01 PM

It's miocean again.

There were many past posts on what may have caused scleroderma. Here is one How did I get this?. That was just one, I remember ones on exposure to things like working in a beauty salon or with artist materials (hi moderator, maybe you can help find that one.)

I had silica exposure. I was the ceramic studio assistant in college and handled raw silica with a lot of dust and no ventilation or breathing protection. But my professor, who had much more exposure than I, never developed scleroderma. I handled a lot of art materials. I also had mold exposure, the classroom next to mine was contaminated and all they did was hang a sheet of plastic between the two rooms until it was cleaned up. The superintendent assured us that the entire school was tested and that was the only area, but that was Sept. 2003 and I got sick in February 2004. Coincidence that I and several other people who worked in that area over the years have autoimmune diseases? I also worked across the street from a carpet company that burned down and when they tried to sell the property couldn't because it was so contaminated.

I went to therapy once for compulsive overeating and my counselor made a point worth remembering."If your lawn gets a brown spot, do you dig up the whole lawn to find out what's wrong, or do you treat the area?" I take that approach with the disease. I have it. I don't know what caused it. Treat the symptoms.

Of course it would be great if research could discover the cause so that a cure could be found but as I mentioned in the previous post, it is not a disease that sits alone in that way.

Unfortunately, we are a money making machine, like cancer. We pay for doctors, prescriptions and tests. The medical industry is a huge one and would go broke if they found a cure for cancer and other diseases. Very sad, but I believe it to be true.

miocean
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#6 Patty Arche-Hueck

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Posted 19 November 2010 - 03:09 AM

I am in the same boat as NorthStarHope; I am confused, I have scleroderma and I just cannot explain to anyone how I got it or what it is.

All I can say is that is a connective tissue, immune system condition and excessive collagen thing,(sorry guys but that is all I read in the sites)and that scared the wits out of me.

Every time I get in the net to look for answers, it's only in this forum that I found some peace, so let's work for the cure some how...hugs Patty

#7 Joelf

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Posted 19 November 2010 - 03:19 AM

Hi NorthStarHope

When I was first diagnosed with Sclero one of the questions my husband and I asked the consultant was how I could possibly have contracted the disease. Her reply was very similar to Janey's, and she explained that it could possibly be some sort of external trigger that set it off. She was quite honest and said that they really had no firm idea and that it could be any number of things.

This was from The Royal Free Hospital where they are experts, so obviously the answer is not straightforward. My own personal opinion (for what it's worth as I have no medical training) is that it could possibly be related to stress and that certainly does seem to make my symptoms much worse.

Miocean, I've found an interesting thread HERE for us all to read (I'm not sure if that was the one you were after! :) )

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#8 NorthStarHope

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Posted 19 November 2010 - 12:20 PM

Ouch! someone please tell me these items are not two of the same, I looked up silica on the internet and there are silica supplements for sale. Maybe I am not understanding this correctly, I thought silica was a toxic compound, or such. :emoticon-bang-head maybe I just need to read on, but needless to say this shook me up a bit!

northstarhope* :emoticons-i-care:  :thank-you: 


#9 Shelley Ensz

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Posted 19 November 2010 - 12:30 PM

Hi NorthStarHope,

Well, that's a wonderful question!

You (or anyone) can ask people for donations and send them to us. Checks should be made payable to the "International Scleroderma Network". We are a fully registered 501©(3) public charity, providing research, support, education and awareness for scleroderma and related illnesses. We send receipts for all donations, and items are eligible as charitable tax deductions.

Many people have held small fundraisers for us, and then just sent us the checks. One person simply invited her friends for a 15-minute "check writing party"! That sure kept it simple. Some people sell something on e-bay or at a garage sale, and send us the proceeds.

Earl Manns gathers sponsors and then runs marathons to raise money for the ISN, whenever he's up to it. So you can run, walk, bike, skate, or cook for scleroderma!

Some families donate to charities for the holidays, instead of giving gifts. One of our donors did a very interesting thing. For the holidays, their whole family brings items that they no longer need, and put them up for auction. Other family members bid on the items -- and then they donate the proceeds to charity. Well, let me tell you, we're pleased as punch to be their charity of choice for such a win-win approach!

Other ideas include making and selling craft items and donating proceeds to the fabulous ISN, holding a sales party for household items or jewelry (whatever) and donating the profit, etc. Even the tiniest bit helps us to tackle scleroderma, because we use the funds so efficiently and effectively around here!

Donations can be made online through our scleroshop. They can also just be mailed to:

International Scleroderma Network
7455 France Ave So #266
Edina, MN 55435

It's nice to print out brochures on What is Scleroderma? (PDF format) from our site, to give to people when they make a donation.

Putting on a large fundraiser is more complex. It requires registering as a volunteer with us, when you are going to be inviting lots of members of the general public, such as for Lisa Bulman's tremendous Scoring for Scleroderma annual soccer tournaments.

Start small. Start anywhere. Just start, because we all desperately need and greatly appreciate everyone's help to tackle scleroderma now!
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.

#10 Shelley Ensz

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Posted 19 November 2010 - 12:37 PM

Hi NorthStarHope,

I'm sorry, these messages are a bit out of order in this thread.

That's a great question! As it happens, it is only inhaled crystalline silica that is a problem. Other forms of silica are fine. In fact, just about the whole earth is made of silica (it is in dirt, gravel, concrete, etc.) so obviously we're not going to keel over and die from it in all forms. It's just when it's in very fine particles in the air, and we breathe it for very extended periods of time (over years, usually, as occupational exposure for miners) that it is problematical.

"Problematical" meaning that then it becomes a potential cause of scleroderma. See Causes of Scleroderma: Silica Exposure for more information.
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.

#11 NorthStarHope

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Posted 20 November 2010 - 01:42 AM

Hi, Shelley

Thank you so much for being there to answer my questions, I am really learning so much. I have thought about ebay as a way to raise scleroderma awareness and donations. Its people as you that make this crazy world a better place!
:thank-you:

sincerely,
northstarhope*

northstarhope* :emoticons-i-care:  :thank-you: 


#12 Amanda Thorpe

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Posted 21 November 2010 - 10:00 AM

Miocean how true, people lapse into unconsciousness by the time I finish telling them what scleroderma has done to my poor, old body! :tired:

I have sclerodactyly hands and find them quite a challenge at times but had always thought the upside was that they scream "I have scleroderma!" until someone asked me if I'd been burned! :o :( Oh well.

Take care.
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