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Biomarker for Diffuse Scleroderma skin has been discovered!


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Can we pass any of this on to our kids?


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#1 smurfette

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Posted 24 July 2008 - 06:44 PM

I was just wondering if there is any part of all this that can be passed onto our children and if so, what kind of tests do we need to put them through to watch them and keep them as healthy as possible? Has anyone ever studied the issue of heredity? How does it manifest itself in the next generation?
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#2 summer

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Posted 24 July 2008 - 11:02 PM

Hi Smurfette, I don't think anyone is really sure whether Scleroderma is hereditary or not, some people are more disposed to getting this than others. Environment also plays a huge factor.

I have a four year old, which I hope doesn't ever get Scleroderma, of course I will always look for any signs and am very careful regarding chemicals and dust around both him and me. Personally, my husband and I will not subject him to any screening tests or blood tests unnecessarily unless we absolutely had to.

I think we all would like to know for certain whether this is hereditary or not, we can only guess for the time being.

Take care
Celia

#3 Margaret

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Posted 25 July 2008 - 12:58 AM

Hi Smurfette ,

This is quite interesting since it is my 20 years old son who has the UCTD......not me or his Dad. I always wonder if the connection is from the transfer of placentia blood (as some have suggested) does that mean I will develope Sclero/UCTD? It's a good topic for discussion.

Take care, Everyone.
Margaret

#4 LisaBulman

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Posted 25 July 2008 - 01:20 AM

I often wonder if I will pass this on to my little girls, There is some interesting information here: genetics Scroll down to: Familial Progressive Systemic Sclerosis (FPSS)

Familial Progressive Scleroderma is a form of systemic scleroderma that is known to be hereditary.

There are also more interesting articles to read.

Hugs,
Lisa


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#5 Sheryl

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Posted 25 July 2008 - 01:25 AM

Margaret, my 27 year old son may be showing signs of scleroderma. The doctors think my disease passed through the placenta blood on to him. He is being tested for several disorders including carpal tunnel and raynauds. My other two sons that are much old have shown no signs. I wasn't showing signs of sickness with them.
Strength and Warmth,
Sheryl

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#6 LisaBulman

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Posted 25 July 2008 - 01:38 AM

Interesting Sheryl. I was diagnosed a few years before my first daughter was born. I hope that is not a sign of things to come....
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#7 Margaret

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Posted 25 July 2008 - 05:29 AM

Hi Everyone,

If I am not mistaking, there are several who chime in with a family history of Sclero. It is amazing to me that everyone has different symptoms/severity, etc. Why do some of us have kids with sclero and, yet, there is no one else on either side of the family with it? It is a very complex puzzle!!!

Take care, Everyone.
Margaret

#8 Sheryl

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Posted 25 July 2008 - 08:39 AM

Lisa, I also hope it isn't a sign of things to come.

Margaret, there hasn't been any signs in my family either up until lately. Different relatives say "oh, aunt so and so had that on your mothers side". Then at age 80 my mother's, doctor's are finally starting to say she has MCTD. She has many of the same symptoms as I have but has never been given a true diagnosis. She didn't start getting many of the symptoms until the last few years. After having thyroid surgery she started showing other symptoms. Now she is recovering from twisted bowel disorder. She had surgery and is doing well. Sound familiar.
I guess we may never really find out the true culprit of our disorders. As long as we get better cures and quicker diagnosis'.
Strength and Warmth,
Sheryl

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#9 Purr

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Posted 25 July 2008 - 11:04 AM

Sheryl,
That has been my experience too. When my sister was diagnosed with lupus we started looking into family health history. Sclero, lupus, etc. hadn't been defined at that time, so the problems were just called arthritis or something on that order.

Christy
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#10 kellyA

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Posted 25 July 2008 - 12:15 PM

My aunt has sclero and also my cousin has lupus and another cousin with poly? spelling I know it's in the sclero family, I guess a research center would have a field day with my family, ..

I have 2 little kids and I hope I do not pass them on to it....

kellyA

#11 Margaret

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Posted 25 July 2008 - 12:49 PM

<<Sclero, lupus, etc. hadn't been defined at that time, so the problems were just called arthritis or something on that order. >>

Christy ,

You are probably right about this. My Dad had Rheumatoid Arthritis.....that is the only autoimmune disease, though, on either side of the family.

Take care, Everyone.
Margaret

#12 Amanda Thorpe

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Posted 25 July 2008 - 01:17 PM

Hello All,

I am of the opinion that autoimmune diseases must be hereditary, I have 4 of which two are raynaud's and SSc, my identical twin has follicular lupus and fybromialga, my mother has fybromialga and raynaud's and my maternal grand mother had psoriasis. Cleary the gene pool of pain and death can't be a coincidence, can it?

There must be a family predisposistion to autoimmune diseases the same as there is for cancer or heart disease.

Well that's my theory anyway but as it's just based on my freaky family you're unlikely to find anyone else supporting it.

Take care.

Amanda :lol:
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#13 smac0719

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Posted 25 July 2008 - 02:16 PM

My mom has rheumatoid arthritis and shingles. She was suspected to have lupus a few years ago, but nothing was conclusive. I have a maternal cousin and a paternal aunt with lupus. It makes you wonder...............
I may have Scleroderma, but Scleroderma doesn't have me!

#14 Sherion

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Posted 25 July 2008 - 03:27 PM

It does make me wonder. My grandmother (who died before I was born) was crippled up with arthritis and could not get out of bed. She was also skinny as a beanpole. She lived on a farm in the deep south and they didn't have good access to doctors. It makes me wonder if she really had arthritis or if it was sclero or even polymyositis.

#15 susie54

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Posted 25 July 2008 - 04:54 PM

My mom has limited scleroderma with sgjornes. She is 87 and still plugging. She never gave up and wouldn't take no from doctors.
I have mixed connective tissue disease with lupus/sclero mix. My daughter started ccoming down with symptoms when she was 13. They have been mild and tend toward Sgjorne's syndrome more that lupus. She has alot of my problems showing up. It breaks my heart but she is doing well and learning medicine.
So yes, I believe it is very inheritied. Susie54

#16 smurfette

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Posted 25 July 2008 - 07:54 PM

Well, so when I asked this question I opened Pandora's Box! It seems like we all feel that these diseases may or may not be the exact ones to be inherited, but the predisposition to get some kind of autoimmune disease is inherited. It also is clear that since the classifying of the various diseases into specific groups with names and specific symptom groupings is relatively new, older family members were not diagnosed due to the state of medical knowledge at the time. The whole ANA testing did not exist. So some of us inherited the propensity to get an autoimmune disease from family members and we may in fact pass that propensity on to our children. That saddens me. I gladly pass on the shape of my nose and having the second toe longer than the big toe, but I feel truly sad that I might be responsible for either one of my kids getting the predisposition for an autoimmune disease. I hope that there is nothing in their lives that occurs to set it off. Perhaps medical knowledge will continue to grow so that it can remain a gun that is cocked but never fired.

What triggered the autoimmune response to become active in us was discussed in another post. For some of us it was a trauma, others it was some kind of virus. Others were unclear. What has become clear to me from all of your posts is that I have to watch my children to see if they are showing any signs of my disease or anything that appears to be signs of an autoimmune disease so that they can get proper treatment from the outset of the disease. My symptoms started full bore after my son was born but before my daughter, but in looking back they were there to some degree even before he was born. Maybe there is something to that theory about placental blood exchange.

My hope is that research goes in two directions. Curing the disease once we get it (or at least better managing of our symptoms so that living with our disease is like living with a minor condition that is managed by medication that keeps our symptoms at bay) and finding out how to keep people who have the propensity for getting an autoimmune disease from actually getting it. Almost like taking a blood test, finding you are positive and then getting a vaccine to prevent it. So much pain and suffering could be prevented.
Smurfette

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#17 truman

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Posted 26 July 2008 - 12:46 AM

Smurfette:

My mother had rheumatoid arthritis from as far back as I could remember. She died from lymphoma several years ago. My father had many "odd" physical problems including the skin peeling that I've recently experienced; they are citing medications in my case, but who knows? My oldest son has had psoriasis since he was a child.

My younger son, to date has shown no signs. He has also been able to slowly accept my illness. My older son still remains aloof and I believe it's a trigger reaction to fear. I used to think he was embarrassed by my illness and secretly angry with me for being sick, but now I believe it's a large fear in his mind that there may be the possibility of heredity of this disease. I believe out of sight, out of mind is his way of dealing with this fear but I think the stress of constantly worrying and obsessing over it could be the stress that triggers it.

Physically this disease can wreck havoc on us, but the I think the emotional impact is harder to deal with for both the patient and their families.
Tru

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#18 Margaret

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Posted 26 July 2008 - 01:20 AM

<<It also is clear that since the classifying of the various diseases into specific groups with names and specific symptom groupings is relatively new, older family members were not diagnosed due to the state of medical knowledge at the time. The whole ANA testing did not exist. So some of us inherited the propensity to get an autoimmune disease from family members and we may in fact pass that propensity on to our children. >>

Hi Smurfette ,

I second this statement......truely belive this is correct!!! Some autoimmune diseases may need recessive genes....needing two parents and others may only require one parent passing on that defective gene. Heaven alone knows what *triggers* the disease to start........why some have mild symptoms and other have fast and ferious symptoms. Why do some people react so well to one drug (like Plaquenil) and others need SCT to go into remission?

Take care, Everyone.
Margaret

#19 Karenlee

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Posted 26 July 2008 - 03:16 AM

I didn't know psoriasis is an autoimmune issue? My sister has it and also has carpel tunnel syndrome. Should I be worried? Mom has mild thyroid problem. (but shes in her late 70's and I think most women have a sluggish thyroid by that age).

Karen

#20 epasen

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Posted 27 July 2008 - 03:43 AM

What I've heard/studied, I've understood that when it comes to rheumatic diseases or autoimmune diseases it's more likely for you to get one if there's a history of them in your family. You don't directly pass sclero to your kids, but there's probably a better chance for them to get sclero or some other disease. My mom has some kind of rheumatic disease and my sister seems to be having a mild case of Reynaud's phenomenon. I'm the only one with sclero and Reynaud's though.