• Announcements

    • Joelf

      Upgraded Sclero Forums!   05/18/2017

      Welcome to the Upgraded and Redesigned Sclero Forums!!   Our Forums are even better and more up to date than before.   Happy Posting to all our Members!!
razz

Scleroderma Causes

66 posts in this topic

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

Share this post


Link to post
Share on other sites

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

 

Carrie Maddoux

(Retired)ISN Sclero Forums Support Specialist

(Retired)ISN Sclero Forums UK Chat Host

International Scleroderma Network (ISN)

Share this post


Link to post
Share on other sites

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


Sam

Share this post


Link to post
Share on other sites

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.

Share this post


Link to post
Share on other sites

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


Live well, Laugh often, Love much

Share this post


Link to post
Share on other sites

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


Live well, Laugh often, Love much

Share this post


Link to post
Share on other sites

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.

Share this post


Link to post
Share on other sites

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

Share this post


Link to post
Share on other sites

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.

Share this post


Link to post
Share on other sites

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

Share this post


Link to post
Share on other sites

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!

Share this post


Link to post
Share on other sites

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


Live well, Laugh often, Love much

Share this post


Link to post
Share on other sites

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

Share this post


Link to post
Share on other sites

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.

Share this post


Link to post
Share on other sites

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

Share this post


Link to post
Share on other sites

In January 2007 my mum slipped and fell badly down our stairs. A few weeks after the fall her sclero symptoms out of the blue and were aggressive. In June 2007 my father was diagnosed with cancer. The stress of my fathers illness caused mum's condition to advance at an ever increasing rate.

 

So for my mum, the initial trigger seemed to be the trauma of the fall, but the stress of other illness in the family increased her symptoms even worse.

Share this post


Link to post
Share on other sites

Joel,

 

That's incredible that your pulmonologist was able to predict ssc on your medical records. How he figured that is so interesting. I've heard of people developing ssc whose jobs aggravated some form of pulmonary illnesses, such as coal miners, asbestos removal and any type of work involving inhalation of a foreign substance. Thank you for sharing your experience. I hope you are receiving the best medical treatment and feeling much better these days!

 

 

ShawMJ,

 

Common household cleaners, i.e. bleach, ammonia, oven cleaners, etc. used on a daily basis can have an adverse effect on the body causing various illnesses. I wish the maintenance/housekeeping industry would consider some form of mouth and nose protection for their employees. After my diagnosis withSD I've become sensitive to the smell of chemicals. I can't be around any strong chemical. I agree, we have to take it one day at a time and it could always be worse! You have a great outlook on life! Stay well!

 

 

Emmie,

 

I also had the typical "sausage" fingers with raynaud's in the beginning. I've learned that people withlow to zero stress can develop SD. I'm amazed at the variations and differences in everyone's experience with SD. I'm also impressed with the strength and tenacity demonstrated here and believe we can learn from each other's stories. Thank you for sharing your experience! Wishing you the best of health!

 

 

Webby,

 

I am so sorry to hear of your mom's fall and your dad's diagnosis of cancer. To have both parents develop illnesses within a one year period can be devastating and overwhelming. I will keep you and your parents in my thoughts. I hope they are getting the best medical care and treatment and are on their way to recuperation. Stay strong and be sure to take time to care for yourself!

 

Hugs,

Razz


Live well, Laugh often, Love much

Share this post


Link to post
Share on other sites

I did forget to mention that I suffered with bowel problems from the time I was a childThe other biggie was that I had endimetriosos (sp,).For me it was torture and after having my last child at 30 had a hysterectomy.It was the best releif I ever had until I discovered that it was genetic and sure enough my youngest daughter was diagnosed with it a few years back.So it goes on and on-anyway someday we may be able to say I once had diffuse sd,fibro,herniated disk,peripheral neuropathy,sjogrens and all the other stuff,but now they found a cure and I'm well now.That is something to look forward to.I hope it happens in our lifetime.Hugs to all.Mary

Share this post


Link to post
Share on other sites

Thanks Razzberry.

 

Sadly Dad is no longer with us (i made a type in my last post he was diagnosed in June 2007, which was AFTER mum's fall).

 

I am taking Mum for another visit to the Royal Free Hospital in London on thursday. Mum's breathing is really bad now so we're hoping for bosentan, or some other PHT treatment. She is taking sildenfil (viagra) at the moment, which is helping a small amount. Fingers crossed!

Share this post


Link to post
Share on other sites

Webby,

 

I'm sorry to hear your dad passed away. I, too, hope this medication helps your mom's breathing.

 

 

Razz


Live well, Laugh often, Love much

Share this post


Link to post
Share on other sites

Razz,

 

Funny, I kept my first reply short and sweet because it was getting really long winded and I was thinking of things as I was typing (sort of putting the puzzle together in my mind) and if I had kept going it would have been 3 pages long, so I'm going to try to breifly summarize here Lol

 

Adolecence: Constant strep throat. Always on antibiotics. (doctors were arguing weather or not to remove my tonsils. Never had them removed)

 

Between adolecense and early teens, extremely unhealthy family life. Very mentally toxic and damaging emotionally and very abusive.

 

Early teens: Warts on hands. Family life worsened.

 

Late teens: Anxiety/pannic/agoraphobia along with severe weight loss at first, then severe weight gain and loss of 80% of hair. Also skin dry like an alligator. (odd for a 17-18 year old).

 

I lived with the weight and baldness for many years before finally getting diagnosed with hypothyroid in my mid to late 20's. Synthroid helped with the weight, but the hair never came back and even got a bit worse over time. (I attribute some of the hair loss to thyroid but most to autoimmune/lupus which was not diagnosed at the time).

 

Late 30's developed Raynauds. My Dad was very ill and I was back and forth taking care of him while working full time at a high stress job. Also in the interum my mom had triple bypass and was taking care of her too.

 

Got married at 39 and noticed the tanglestasias after I came back from my honeymoon but just chalked it up to too much sun on the cruise.

 

Dad passed away December 2006. I felt like I lost the only link to sanity that I had left. I was lucky enough to be at his bedside when he passed, but I remember feeling like I was going to lose it right then and there. When we buried him, I tried to kneel down to put flowers down and could not bend at all. Completely stiff, so this is when the UCTD came on the scene. I just thought I was out of shape and needed to do some stretching or yoga. (yeah right lol)

 

Work became unbearable as I was in a constant Raynauds attack and my cuticles were destroyed and infected. Writing became painful.

 

After applying for disability I was told to see a Rhumetologist which is when I was told I had CREST variant, UCTD, autoimmune issues with lupus like antibodies. etc. Saw dermatologist to diagnosed scleroderma.

 

So, that's a brief as I can possibly make it Lol Sorry if it's super long but it did start IMO when I was young. Just now it's taken a different turn.

 

Thanks for listening. It was theraputic to put it down in sequence.

 

Karen

Share this post


Link to post
Share on other sites

I finally had to post on this thread after reading about Truman and the mosquito sprayer.

Ages 7-10 I lived in Okinawa (my father being a Marine officer). Periodically a truck would go by spraying insecticide (probably DDT) throughout the neighborhood. The whole place smelled of the spray. Perhaps a contributor?

 

I find it difficult to try and guess at causes, since the variables are virtually infinite. So many chemical (e.g.- asbestos) were routinely used. Many common old agrucultural chemical have now been banned.

 

I spent many childhood hours wading through the creeks and ponds in Okinawa looking for fish and frogs. They were probably full of dangerous chemicals, what with the place having been bombed to smithereens less than twenty years earlier.

 

I've done quite a bit of furniture refinishing as well as work on cars, so there are more chemicals.

 

Since my father also had the disease, I'm inclined to assume that there is something genetic involved. Strangely, my two sisters show no signs of autoimmune disease - so in my family it's been only men that get this mostly female disease.

 

My father was thought to have been effected by the "Agent Orange" defoliant used when he was in Vietnam. He said the stuff fell from the sky like rain. But he already had signs of scleroderma, and thousands of vets didn't seem to be effected...

 

I think that we have a genetic weakness that can be set off by environmental factors. Some get scleroderma, others might get hypertension.

 

It's difficult to draw conclusions when there aren't double-blind tests and good statistics to back up conclusions.

 

Craig

Share this post


Link to post
Share on other sites

Karenlee,

 

Most teenagers have issues with anxiety and peer pressures. But you've had more than your share with toxic abuse, ailments, taking care of your parents and then losing your father. You are a beautiful and amazing person! I admire your strength and endurance to persevere through so much adversity! You are an example to everyone not to give up.

 

 

Keep that beautiful smile!

 

Razz


Live well, Laugh often, Love much

Share this post


Link to post
Share on other sites

CraigR,

 

I remember the mosquito truck too and the noise the siren made warning everyone it was coming. I would close my windows or, if I was outside, hold my breath (that didn't work too well). Perhaps a contributor? Possibly.

 

That's interesting that the men in your family developed scleroderma. I've also read about our Vietnam vets who, after exposure to agent orange, developed scleroderma. There has to be a connection with the exposure and the scleroderma.

 

I've concluded that there is no one set pattern or cause for SD. Maybe we can't avoid developing SD if we have a genetic predisposition. What I am hoping for is one cure for everyone. A way to stop and reverse an autoimmune disease.

 

I agree better statistics and double-blind studies would give us more conclusive answers.

 

Thank you for sharing your childhood experience and family background.

 

Stay strong!

 

Hugs,

Razz


Live well, Laugh often, Love much

Share this post


Link to post
Share on other sites

Hi KarenLee:

 

I too, had constant strep throat from youth on. I also remember as a teen, being in the ER for an unrelated incident and the doctor on call being drawn to the tanglestasias and questioning how long I had it. I shrugged it off as birthmarks, as I had them forever. My family life was also a destructive and dysfunctional life as I lost my dad at 15 and my mother didn't know how to deal from that day on in a normal parental role. My skin was always dry and flaky, too much for a young teen. Warts too. The list goes on and on. Seems to be similar signs among all of us.


Tru

 

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

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now