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Biomarker for Diffuse Scleroderma skin has been discovered!


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Scleroderma Causes


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#21 catherinechaos

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Posted 01 July 2008 - 01:13 AM

Yes it was stress for me too - I was 22 and had just left home for the first time, had moved to London and was struggling with homesickness. That's when the first symptoms appeared. I think stress has a huge effect on the appearance of symptoms but who can go through life without any stress?!

#22 razz

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Posted 01 July 2008 - 02:12 AM

Smurfette,

I like your comparison of babyboomers being the sandwich generation. That's a great analogy but so true!

This past year has been the most peaceful than I can't even remember! Right now my disease is stable and under control. I'm glad you feel better too!


:lol:
Razz
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#23 georgette

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Posted 01 July 2008 - 02:38 AM

Hi, like Jensue I got RSD (Reflex Sympathetic Dystrophy) first. I wasn't under any stress, I had a blood test and the needle hit the median nerve and caused the RSD. I had that for a few months then noticed everything starting to feel tight, muscles. tendons and skin. Blood test came back positive for systemic sclero. All the doctors said it was the RSD that brought on the sclero. Hugs, georgette

#24 truman

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Posted 01 July 2008 - 09:50 AM

Razz:

Sandwiched is the right analogy. I so wanted more for my sons then I had gotten, that's where the mistake began. We strive, struggle and fight without asking why. That's from wanting for not being given everything. Okay, our kids won't have to suffer that, so we give all. Mistake; now they don't know what is to work for, earn and learn respect. What is the happy medium? I don't know. Just didn't want my kids to go through all the hard times like me...mistake.....


'
Tru

It is what it is...........

#25 razz

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Posted 01 July 2008 - 10:45 AM

Truman, I agree we don't want our children to experience perhaps what we went thru, so we do so much for them. They then believe this is the norm. If they only walked in our shoes. When my 2 daughters were in their mid-teens I nearly pulled all my hair out! :blink: Now, my youngest is the total opposite, doesn't need anything from me, not money or things. This isn't to say that she won't refuse a gift. She even helps me around the house. Things do balance out somehow. I just hope the best for both of them. We're moms for life!

Catherinechaos, Stress is a part of life, isn't it? I guess the secret is to find ways to either reduce, eliminate, change or accept it. Some things we cannot change. Some things we can. Like I divorced my ex back in '87 and a huge weight was lifted. :blink:

Georgette, That's interesting that in the mist of a blood test a misguided needle would open the door to RSD followed by scleroderma. I hope you're doing better now! Hugs back to you! :)


Razz
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#26 KarenL

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Posted 01 July 2008 - 11:56 AM

Well, this is all amazing. I. like Tru was exposed to the mosquito truck, but my mom used to scream, "close the windows". We lived in Secaucus NJ, where the bugs are legendary.

My parents were abusive emotionally and physically. At age 18 I left home and never looked back. I put myself through college and got married to my party buddy out of fear of being alone after college.

Then I was married for 20 years to an alcoholic. Got ulcerative colitis during my third pregnancy 1991, while he worked away from home for three years. Had my colon removed after three years of suffering because I didn't want to stop nursing the baby. In the year after the operation I started with Raynaud's.

I had many more family problems which I won't go into here. I was hospitalized for a thoracic sympathectomy. Then, at my new job I fell on ice and broke my ankle and was laid up for two months. Got married, that summer '04, and the next year had gangrene, got diagnosed with sclero, lost the tip of a finger, and had my first heart attack. '05. Sclero progressed, I got laid off and have been out of work now for two years, then two years later I had two more heart attacks! That was last year, '07 and now it's menopause, what fun!! Stress?? Yeah maybe. :P

Thankfully, I'm an amazingly laid back person. I take pretty much everything in stride. What can you do? Anyway, interesting stories, we are a bunch of amazing people for sure!

Peace, and I don't say that lightly!
Karen

#27 jefa

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Posted 01 July 2008 - 11:03 PM

I am certain that stress in our lives exacerbates any condition we are faced with and also triggers many conditions, but it seems to me if the horrific things people go through were the direct causes of scleroderma, there would be a lot more people who suffered with it. I have had a lot of stressors over the years, but my symptoms first started during one of the most peaceful stretches of my life.

Of course none of us can be sure about these things, but for me, I think it was a series of events that confused my body's immune system into going into overdrive and then it just didn't stop. I had just had a complete hysterectomy (of course, the symptoms and diagnosis leading up to this were stressful in their own right) which went well and was recovering nicely. But there was a section of the 10" 'smile' which didn't close properly and didn't heal. When the staples were removed, it was evident that part of the edge had been turned under incorrectly, so the raw edges weren't joined. Once that was adjusted and closed with steri-strips, the healing progressed as it should. I went back to work as quickly as I could (in retrospect, not a great idea) and then took a trip home to visit my grandchildren in California, one of whom passed on a nasty upper respiratory virus to me. This combined with my weakened state and jet lag, caused my whole body to react with what I have now come to recognise as a flare. I never really got better and had to quit working two years later.

Environmentally, in the seventies I worked in direct contact with solvent chemicals (trichlorethylene) which are on the list, but I would have expected something to have happened sooner if that were the cause. Who knows.
Warm wishes,
Jefa

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#28 Sam

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Posted 02 July 2008 - 01:53 AM

I really dont know, I had my children all by the age of 21. That is when I started having my raynauds flair ups. But since childhood I never felt good tired all the time. So I really dont know. We think I have had it long time before finally get the diagnosis. Who knows. Sam
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#29 GocartMoz

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Posted 02 July 2008 - 06:03 AM

I have wondered about this issue many times. Stress I am sure doesn't help matters but I don't feel that my life was any more stressful than usual when I started to get sick. I really have no idea what caused my scleroderma. My wife has had a theory that frankly I have never bought into. At the time I had gotten sick I had been on one of the low carb diets for quite some time. She believes my diet had something to do with the onset of my illness. I know of no evidence that suggests a correlation, but who knows, maybe she is on to something. As far as I am concerned, I have no earthly idea what brought it on. There is no history of rheumatological diseases in my family. It is simply a mystery to me.

#30 razz

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Posted 02 July 2008 - 06:56 AM

KarenL,

You are an amazing and strong woman! To have gone through your experiences is truly extraordinary. Thank you for sharing your story with us. I hope you have found peace and happiness in your life! You deserve it! (The mosquito truck stories are really interesting.)

Jefa,

I agree with you that there has to be more to scleroderma than excessive stress being a cause to developing this condition. Stress is a part of life and based on that alone there would be astronomical amounts of people with autoimmune diseases.

You've had quite the ordeal with the surgery and healing. I hope you're enjoying a peaceful and serene life in Scotland!

Sam,

Maybe we have the precursor to SD early in life and it lies dormant for many years. I'll be glad when more research is done on SD. Hope you're doing good and feeling great these days!


Hope everyone is having a fantastic day! Sending hugs your way!!


Razz
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#31 razz

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Posted 02 July 2008 - 07:10 AM

David,

You raised an interesting point. What about average stress or even a peaceful life. Woman tend to be analytical thinkers so I think your wife's on to something! Your situation is an interesting one for sure. My grandmother had rheumatoid arthritis but no one else in our family developed anything like SD, just me.


Razz
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#32 aniwallar

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Posted 03 July 2008 - 03:17 PM

Hi:

I don 't think stress was the cause of my scledorema. I had just moved from Croacia to United States but, because of my husband's job, my family is used to the moving and we even like it.
I noticed one summer after coming back from a boat trip that my hands were getting purple. I thought it was just bad blood circulation so I decided to see a doctor. For me it was easy to get the diagnosis. That was over 4 years ago.
A month after my diagnosis , I felt my breast getting hard. I have breast implants so I went back to my doctor so he could look at them. One of my implants had ruptured. It was silicone so I think that probably that is what trigger my condition, even though the doctors say that it is impossible.

Best wishes to all,

Ani

by the way, I finally quit smoking. So far it has been 8 weeks, cold turkey.

#33 Leslie R.

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Posted 03 July 2008 - 03:18 PM

Hi Razz,

It's Leslie again I was just reading your topic about what cause your Scleroderma. It took me about over 1 year to get a diagnosis which was July 2007. It all started with me having stomach pains and diarrhea, my first doctor taught it was menapause and prescribed acetaminophen. It did not help because I still had the same symptoms and was losing weight fast. I did see a gastroenologist and could not find anything. I then saw some discolorations on my hands and went to a dermatologist, which did a skin biopsy and confirm I have Vitiligo, but still have the stomach problems. Next I had a PET Scan and result was abnormal lymph nodes, that they could not get a diagnosis. I had to remove my neck and groin lymph nodes to get a diagnosis, and that was no good, it show some sign of Lymphoma. Next I had to see an Oncologist which did a bone marrow biopsy and blood test, it came back showing signs of Lupus.

With all of that happening I had muscle and joints pains too, my physician referred me to a Rheumatologist which diagnose me with mixed connective tissue diseases, (Scleroderma, Lupus and Vitiligo). These diseases had brought out so much symptoms that is hard to figure out which one is reacting more, I currently have 10 doctors and 12 medications.

Still I will like to know what cause this, I went back to when 9/11 happen at the world trade center, where I was working downtown. Or maybe where we use to live in a dirty building where the people kept their apartments and the building unclean. Even the environment with all the toxic that is in the air and food. Hopefully when they do find a cure, they can find the source of this disease.


Keep well,
Leslie R

#34 Shelley Ensz

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Posted 03 July 2008 - 03:22 PM

Hi Ani,

Congratulations on quitting smoking!!! Although you went cold turkey, I'd have to think you have developed some techniques for doing it. What are your secrets?
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.

#35 razz

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Posted 04 July 2008 - 07:04 AM

Hi Ani,

I'm surprised your doctor(s) don't believe your silicone implants have anything to do withthe onset of SD, especially when there have been studies and cases suggesting otherwise. It's so important to find a doctor who's a knowledgeable specialist in SD, especially with the variations of doctors' opinions on treatments and causes of SD.

Good luck and congratulations on staying smoke-free!


Hi Leslie,

I'm glad your doctor referred you to a rheumatologist who was able to properly diagnose your condition. It sounds like they are doing a thorough job in testing your symptoms. I hope you are feeling better and getting some relief.

I'm motivated and inspired every time I read someone's experience to bring awareness to this disease. I am hopeful that some day we will know the cause and have a cure!

The 9/11 tragedy is an event we will always remember. I'm sure those airborne toxicities affected many people.



Stay well,
Razz
Live well, Laugh often, Love much

#36 Purr

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Posted 04 July 2008 - 11:21 AM

I've been trying to think back and the only thing I can think of is "depression". I was working for a contract house as an office manager for the company I retired from. When the job was close to ending, I remember thinking "what am I going to do now. I'll be all alone. No reason to get up." Don't know why I felt that way. When I retired I couldn't get the smile off of my face. The job ended March 8th. I went in for a colonoscopy the next week and it was all down hill from there. My desire for food disappeared. I'm 5' 7" and went from 153 lbs to 123 lbs in 8 weeks. I never said very much to my family or friends and by the time I did, I couldn't drive because I was so weak and I could hardly breath. Nobody had seen me, so they had no idea. That sure won't happen again.

But now I'm getting fat <_< and sassy :rolleyes: again and I am sooooo thankful.

Hugs and cheer,

Christy
Love makes the world go around!

#37 razz

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Posted 04 July 2008 - 03:48 PM

Christy,

From what I understand any kind of transition, both good and bad, can affect our immune system. I think you hit it on the head when you mentioned retirement. To go from being a productive worker to being a full-time stay at home wife, is a huge adjustment to say the least.

I am so glad to hear you're curvy and sassy!!


Hugs,

Razz
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#38 Joel

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Posted 05 July 2008 - 01:52 PM

Bird dander! In 2000 we bought a home that the previous owners allowed birds to fly around. After about a year we were digging under the deck where they cleaned the bird cages and was overexposed. I ended up with Non-specific Interstitial Pneumonitis (a lung disease) which after a biopsy of my lung confirmed that it was brought on by the exposure to birds. We had to rip out all our carpets and repaint the inside of our house.

What really shocked me was about five years later after being diagnosed with Scleroderma, I was reviewing past medical records preparing for disibility and found a note from my Pulmonologist from the UWash. predicting that I would have scleroderma in about five years. Well he was right! Also, I was under a lot of stress at work when I was diagnosed with SSc.

Joel

#39 ShawMJ

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Posted 05 July 2008 - 01:59 PM

I too had lots of stress.Have had ulcerative colitis for many years,In early 80's developed a rash on arms and elbows that doctors.just could not figure out what it was.they finally found something that got rid of it.Then husband took a job in Venezuela and I worked in housekeeping at a local casino.I will ALWAYS believe that its the chemicals that we used on walls floors bathrooms glass and everywhere else that caused my diffuse sc diagnosis.Of course proving it is another thing but I do know that prior to being exposed to that I didn't have too many problems except for the uc and it is a huge problem on its own.So it seems that a lot of others were exposed to chemicals as well so thats got to be something there.Anyway its there and I take it day by day how else is there to cope?I always say things could be worse! Hugs to all. kittyears.

#40 emmie

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Posted 05 July 2008 - 07:23 PM

As is true with limited/crest, Raynauds was my first symptom. When I developed Raynauds everything was A-OK as far as I can recall--no stress, etc. Other symptoms appeared over time such "sausage" fingers, worsening Raynauds in my hands and it spread to my feet and ears.

There were also a couple of spots on both sides of my face that had become so dry or something that I could not put enough lotion or cream on them, but nothing helped. In hindsight, it was skin hardening. Skin hardening on my first two fingers decreased manual dexterity and feeling in my fingers.

Since the Raynauds came out of nowhere, it seems that scleroderma came out of nowhere. However, when the other symptoms began I was under a great deal of stress. Whether or not that triggered those symptoms......"you be the judge".....
emmie