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#1 problematic

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Posted 06 May 2007 - 05:02 PM

Hi everyone,

Allow me introduce myself. My name is William and I'm 23 years old. I was diagnosed with systemic scleroderma back in 1998 when I was just a little kid. My doctor said it is rare for kids my age to have this disease. Few years before my diagnosis, I was given a TB shot and it showed positive. So I was given some routine medication to take. I think it had some allergic reaction in my body but right now I can not remember the details of it. I'd like to ask you guys here if you'd experienced any side-effects from TB shots?

Because sd is mostly a genetic disorder, and none of my family member has it, I'm starting to question whether it's the meds I took that cause my immune system to fail. IF anyone has any insight into this , please contact me.

#2 peanut

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Posted 06 May 2007 - 05:37 PM

Hi.
I don’t think I’ve ever had a TB shot… hum...

From what I've read - and I could be wrong but I don't think researchers haven't established a definitive cause for scleroderma. It can run in families, but in most cases it seems to be a mystery. Now I’m not a doctor but I think with scleroderma a person's antibodies are directed against his or her own tissues so it’s more like your immune system is over active rather than inactive or failing.

I’m not sure if I helped but I know there are lots of good people here that know lots more than I do.

Good Luck & Good Health

peanut

You can deprive the body but the soul needs chocolate
my HMO makes me wear a helmet...

#3 whirlway

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Posted 06 May 2007 - 07:33 PM

William, I am sorry to hear that you have been diagnosis withsclero. I really feel that genetics and environment have a lot to do withsclero and autoimmune diseases in general. I had 5 people in my family, mom, dad, one brother, and one sister. All of whom were diabetics. My brother died @ age 38 from diabetic complications. My mom died from lung cancer. My dad died from congestive heart failure and pulmonary fibrosis. My sis is still living, although she had a kidney transplant approx. 15 years ago. My great-grandfather was a full-blooded Choctaw Indian, and Choctaws have a higher incidence of sclero than any other group of people world-wide. We were also down-winders, we lived not far from the Hanford Nuclear Plant, and we were farmers, out in the dirt and chemicals all the time.
My dad and I had several similar symptoms, so I really believed that he had sclero, although when I tried to talk to his dr about it, he just brushed me off
I had symptoms when I was a child, but the doctors could never put it all together.
After the birth of my 3rd child @age 32, the symptoms came roaring back witha vengence. I am now 56 and have done a lot of research on these subjects.
I did have a TB shot, but had no reaction to it.
It might help to do some family research, possibly some of your older relatives to see if they might have had some of the symptoms.
Please feel free to send me a private e-mail if I can be of any help.
~whirlway


#4 janey

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Posted 07 May 2007 - 03:18 AM

William,
Welcome to the forum! I'm sorry you are here due to having scleroderma and having had developed it at such a young age. Yes, juvenile scleroderma does occur, but it is rare.

I've never had a TB shot nor does anyone in my family have scleroderma. There are so many possible causes of scleroderma, that I feel people get it for different reasons. If you go to the link I provided you'll see that not only are there many causes, but they ranges from genetics to vitamin D deficiency. I think that mine was mostly brought on by hormones. I was totally non-symptomatic prior to perimenopause, then as I started to go through menopause I quickly starting developing symptoms. I've had two doctors tell me that if I had had children, I possible could have gotten in earlier. I quit trying to determine the cause a few years back and now just concentrate on control of it. It's just too hard to prove "how" I got it.

Also, as Peanut said, your immune system really didn't fail, it just works backwards in some areas. It's still there and active, but instead of destroying the back cells, it destroys the good ones. How all the autoimmune diseases can be so selective is a mystery. They'll protect one organ while destroying another one. It's weird. They main thing is not to do anything to BOOST your immune system. It's not weak, it's just backwards.

Please take a look at the links I provided. You should find some interesting stuff. Again, welcome! You've started a great discussion on your first post. I hope to see more of you.

Whirlway - WOW! What a family history! Thanks for sharing.

Big Hugs,


Janey Willis
ISN Support Specialist
(Retired) ISN Assistant Webmaster
(Retired) ISN News Director
(Retired) ISN Technical Writer for Training Manuals
International Scleroderma Network (ISN)

#5 Heidi

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Posted 07 May 2007 - 03:21 AM

Hi William,

Welcome to the forums! We are glad to have you join us, but sorry it is because you have scleroderma. You ask a question many of us have spent a great deal of time pondering...what caused this disease in us? As Peanut said, there does not seem to be any ONE cause for scleroderma. Here is a link from our Sclero A to Z web page that talks about the research looking into the cause of Scleroderma and lists all kinds of possible causes.

I hope you find this information helpful.

Again, welcome!

Warm wishes,
Heidi



#6 relicmom1

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Posted 07 May 2007 - 03:23 AM

Hello, I am sorry that you have this dreaded disease. I think you will find more often than not, there is no rhyme or reason to sd. I am of the belief that environmental issues do contribute. Where I live there seems to be an abnormally high incidence of sd. and lupus. I have a friend about 2 years older than me and he has sd and it evolved in the exact same way mine did. Now, he worked for a chemical company that manufactured Kepone. When he worked there, they took absolutely no precautions (respirators, gloves, etc). The company claimed there was no danger!!!!! Well, they found out that it was exremely toxic, but not until it had polluted the James River and caused problems with the wildlife did they admit to it being toxic. Now, I didn't work in the plant, but I live about 10 miles (as the crow flies) from it and he was at our house all the time, many times straight from work, covered in the chemical dust. I don't know if anyone remembers all of this happening, it made the national news. That plant was in Hopewell VA, and there are many, many chemical companies in Hopewell. I have had many TB skin tests and I never had a reaction to them ( I used to work in Daycare Centers and they are required every year). Well, that's my two cents. You will find the people here are super supportive and will try to help you in any way they can.
Peace :)
Barbara aka relicmom1

#7 Piper

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Posted 07 May 2007 - 05:13 AM

Hi William, Welcome to the site! I'm so sorry that you have been diagnosed at such a young age also. I am not diagnosed but have many symptoms of this disease and positive bloods. I just wanted to say that I worked for 10 years in a nursing home and many of the patients had T.B. I was also given a yearly test but never showed positive. I have a friend who worked with me who has developed scleroderma also. I've also wondered if there wasn't something in our work environment that caused us to develop this. I do have a heavy family history of autoimmune diseases tho. I think that once scientists find the trigger (and there could be many) they'll be able to find a cure.
Take care,
Hugs, Piper

#8 Sweet

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Posted 07 May 2007 - 05:21 AM

Hi Problematic

Welcome! Glad you found us but sure sorry it's due to you having scleroderma. I'm a nurse and I have had many "TB" shots. Actually they in themselves are not a 'shot' or vaccine it's a test and it's called a PPD. If it comes back positive, the routine line of care is to then do a chest xray to see if TB is in an active stage or old disease. If it is old, they do nothing, if it is active then you start on a treatment that consists of taking 9 months of a medication called INH. The PPD would not have caused your sclero, and to my knowledge the INH is not a precursor to it either. As I said, I've had many PPD's placed (it's mandatory for the work I used to do) but my tests were always negative and therefore I never had to take the INH. I do however, know many that have taken it and never developed sclero.

I see Heidi and Janey gave you some great links, I hope you have time to review them.

I hope that helps, and again really glad you are here and I'll look forward to knowing you better!
Warm and gentle hugs,

Pamela
ISN Support Specialist
International Scleroderma Network (ISN)

#9 Shelley Ensz

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Posted 07 May 2007 - 09:01 AM

Hi William,

I'm TB positive, too, and I was on Isoniazid for a year (decades ago). Its my understanding that Isoniazid is known to cause things like drug-induced lupus, but usually that clears up once the medication is stopped. You can do web searches on that.

Most of us do grapple with trying to understand what may have caused our illness or illnesses. But it's difficult with scleroderma since there are so many potential causes, and most of us have had exposure to more than one possible cause. Some cases may be more clear-cut than others, such as someone with severe occupational exposure to a known cause of scleroderma, such as silica.

To be properly overwhelmed by it all, see our Causes of Scleroderma section on our main website.


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 problematic

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Posted 07 May 2007 - 02:31 PM

Thanks everyone for your warm replies.

I am just very mystified by the sudden development of sd when I was a kid. I live in New York City. The environment is relatively clean and I don't live near any chemical plants. So the environmental trigger is difficult for me to pinpoint. Is there any trigger you guys are aware of that are definitely dangerous to those of us prone to autoimmune attacks?

I am trying to learn how to keep my disease in control. Any ideas?