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Family members with autoimmune diseases


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#1 canon

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Posted 05 September 2008 - 04:45 PM

I have read through many articles and most of the messages on this forum. Perhaps I have missed some. Has anyone looked into family members and watched a pattern unfold within their family history and autoimmune diseases. It is really too late for like grandmothers and great aunts for me at least. I can remember seeing my aunts round shapes and cripled fingers and hearing their joints creak. My grandmother (my fathers mother) was tall, skinny with alot of stomach problems and cripled fingers with cracking sounds. At least that's what I think I can remember.

Now in my family members that are still alive or recently passed I have noticed many autoimmune problems. My father had grave's disease, one of my sisters, my brother had it with symptoms then it went away on its own. My other sister has fibromyalgia really bad. My cousins from my fathers side, one was just diagnosed with sjogrens after 7 years of wondering why her eyes and mouth were so dry which no doctor could figure out until she saw a rheumatologist, her sister has crohns disease and so did their mother (very late in life). My mother is 92 and heathier than any of her daughters. We just love her. She has glaucoma and so did my father. She was the oldest of 9 children and none of her siblings had autoimmune problems. No one has any recollection of any one showing signs of autoimmunty in her aunts and etc. I had grave's with hypothyroidism and I have systemic sclerosis. That seems like an awful lot for one family (my fathers). So far the children and (great children) have not been diagnosed with any autoimmune disease but one great niece has and has had lymes disease for several years now and she had to drop out of college because of it. Another great niece has had seizures but no known autoimmunity.

Has anyone else noticed anything or would like to share or shed some light? I think this is an ok question to ask.

Judy
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#2 smac0719

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Posted 06 September 2008 - 03:50 AM

I think there was a post earlier this year on the same topic. I remember it being interesting the number of people who do have family members with AI disorders. Several doctors have suspected my mom has lupus, but none of the testing has ever been conclusive. I'll have to ask her what was going on at the time that made them suspect it. She does have rheumatoid arthritis though. I have a maternal first cousin with lupus and a paternal aunt with lupus. My father had non-hodgkins lymphoma. I have not seen it mentioned as an AI disorder, but it does aftect your immune system or can surface as a result of a weakened immune system in certain people. Although I was told by his doctors that it's not hereditary, they suspected that he contracted it due to the exposure to agent orange from the Vietnam War. He served prior to my birth so I often wonder if through genetics my immune system was compromised.
I may have Scleroderma, but Scleroderma doesn't have me!

#3 canon

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Posted 06 September 2008 - 05:00 AM

Hi smac,

You're right alot of things affect your immune system. Any type of cancer affects you immune system. I remember reading articles on tumor growth and the tissue that is being affected can't shut off and the tumor continues to grow. I think there is some research being done on that in connection with an autoimmune response in cancer too.
Is it hereditary or environmental or both?

Judy
A happy heart is good medicine.

#4 Amanda Thorpe

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Posted 06 September 2008 - 12:08 PM

Hello All,

This subject was discussed earlier and I am still of the opinion that AI's are heriditary. My maternal grandmother had one, my mother has one, I have 4 and my identical twin has 2.

Pity we can't choose our gene pool.

Take care.

Amanda
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#5 sophiebun

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Posted 09 September 2008 - 07:48 AM

My paternal grandmother, and my mother both have RA, my mom has had non-hodgkins lymphoma, I have lupus and sclero along with EI/MCS( which I think is an immune/autoimmune dysfuction).

#6 canon

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Posted 12 September 2008 - 02:37 PM

Ohboy and sophie,

It's interesting to see that people actually talk about autoimmune diseases now. I can remember when no one talked about them until after people had died from them and then it was usually lupus that you heard about. I remember hearing oh she had a blood disorder. Some people still won't talk about them or acknowledge that maybe aunt so and so did have something or they won't talk about their own aches and pains. Aches and pains are not normal for anyone to have to endure. I think it is because the medical profession doesn't trully acknowledge aches and pains or autoimmune diseases.

Thanks,

Judy
A happy heart is good medicine.

#7 Amanda Thorpe

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Posted 13 September 2008 - 11:17 AM

Hello Judy

Aches and pains are not normal for anyone to have to endure

How right you are!

My husband and I were laughing today as we remembered how bizarre we behaved whien I was first becomig ill. When I said to my husband "look at this....." and showed him arms that would not straighten and wrists that would not move we would stare at the appendiges with the same sick fascination that makes people rubber neck car accidents but then continue on with our day. Looking back we both should have run around screaming. I had continuous pain so much so even sitting on a chair at work was a real effort, I would swap chairs throughout the day and carry on regardless. At some point I should have thought "hmmm this ain't normal". My staff would say "THERE'S SOMETHING WRONG WITH YOU" and I would wave a stiffened hand in the air, smile and change the subject.

The skin on my garndmother's hands used to peel off, my mother had and still has continuous muscular pain but it's only since my diagnosed AI, then my sister's, that we looked back and realised mother and grandmother had them as well and I bet our aunts did also.

I agree that if people/doctors did not assume that being in constant pain or having unrelenting symptoms is a normal part of modern living many more AI's would be diagnosed and much more quickly.

Take care.

Amanda
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#8 canon

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Posted 13 September 2008 - 11:56 AM

Amanda,

It is amazing when you look back and see things. It is more amazing to see people that are cripled and having odd things happening to their bodies and feeling the need to accept whatever is happening. Including us! It is difficult enough acknowledging that something is wrong then met with the medical attitude and it is and has been an attitude. What ever happened to do no harm in medicine? Some people should not be in medicine. Imagine the attitude our aunts or grandmothers met when they complained about something no one could see. Athough they all used to say their rheumatism was acting up. So some of them were at least told they had rheumatism.

Judy
A happy heart is good medicine.

#9 Shelley Ensz

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Posted 16 September 2008 - 08:20 AM

This is an interesting discussion on autoimmune diseases in various family members. As it happens, we have an entire section on DNA, Race and Ethnicity that follows the issue of genetics and autoimmune disease. Topics there include:

Overview
Choctaw Study
Ethnicity, Race, Geography
Familial CRST w/ Sicca
FPSS
Genetics and Scleroderma
Human Genome Project
Scleroderma Registries
Shared Autoimmunity
Twins and Siblings Study


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 canon

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Posted 16 September 2008 - 06:11 PM

Shelly,

Thanks so much for the articles.

If I had children I would want to know every bit of lit that was ever written on genetics and environment. Autoimmune is un-nerving and unpredictable; it would be nice to be able to get a head start and be one step ahead of it.

Judy
A happy heart is good medicine.