testing your children

[Guest guest]

Hi:

I just want to know how many have had their children tested and what age did

you have it done? I thinking of having tested.

Sue AIH

Wisconsin

[Guest guest]

Isn't there an autoimmune factor that can be detected from a blood test to

determine whether or not a child or adult, for that matter, is a candidate

for an autoimmune disease? Does that ever change during a lifetime? If

children were checked and one was positive, what could possibly be done

except be vigilant? Do some of you have autoimmune diseases and yet test

negative for this factor? Or is this information really known? Thanks for

any insight.......

In a message dated 8/28/99 8:36:26 AM Central Daylight Time,

barbara99ann@... writes:

>

> > I just want to know how many have had their children

> > tested and what age did

> > you have it done? I thinking of having tested.

> >

> > Sue AIH

> > Wisconsin

[Guest guest]

Sue,

Usually the doctor will do a blood panel during her

yearly physical. That's how I found out about my AIH.

Barbara Ann

AIH Transplant Recipient

--- Roselle50@... wrote:

> From: Roselle50@...

>

> Hi:

>

> I just want to know how many have had their children

> tested and what age did

> you have it done? I thinking of having tested.

>

> Sue AIH

> Wisconsin

__________________________________________________

[Guest guest]

Dear Lidawood:

No, there isn't any specific 'auto immunity factor.' If there is a lot of

auto immune illness in your family, it is possible that your child will get

an auto immune disease, but it won't necessarily be AIH or another liver

disease. For more information about auto immune illnesses, check out

www.aarda.org

Kathy (AIH)

Seattle area

[Guest guest]

Kathy,

We have Aplastic Anemia and ALS in the family. Now an adult [male with UC]

with no symptoms except some elevated blood levels has been diagnosed

following ERCP, etc., as being in the early stage of PSC. The Hepatologist

indicated it had to be an autoimmune disease of some sort because of some

'marker'. Did I misunderstand something? gg

In a message dated 8/28/99 1:25:18 PM Central Daylight Time,

KATBERCOO@... writes:

> No, there isn't any specific 'auto immunity factor.' If there is a lot of

> auto immune illness in your family, it is possible that your child will

get

> an auto immune disease, but it won't necessarily be AIH or another liver

> disease. For more information about auto immune illnesses, check out

> www.aarda.org

[Guest guest]

Dear GG:

A positive ANA or Smooth muscle test can be a marker for some auto immune

illnesses, but it isn't always positive for people with auto immune disease.

Did that make sense? I've had AIH for almost 5 years now, but those

'markers' have always been negative for me. Did you check out www.aarda.org?

It's a website all about auto immune illness. It might answer a lot of your

questions.

Kathy (AIH)

Seattle area

[Guest guest]

I could be mistaken but when I was waiting to be diagnosed they said my

auto immune count went above 160 indicating an auto immune illness.

After a liver biopsy was diagnosed with aih. I was just wondering if I

am the only one or do you all see a great decrease in number of messages

you are getting?

Pa.

[Guest guest]

Yes, there have not been very many messages the last few days!! Everyone

must be pretty busy, or has nothing to talk about!! Lori C.

Liver tx 3~11~97

Re: [ ] RE: TESTING YOUR CHILDREN

From: zjm@...

I could be mistaken but when I was waiting to be diagnosed they said my

auto immune count went above 160 indicating an auto immune illness.

After a liver biopsy was diagnosed with aih. I was just wondering if I

am the only one or do you all see a great decrease in number of messages

you are getting?

Pa.

---------------------------

[Guest guest]

Lynn:

I 'retire' and nobody posts anymore. I have to have something to read

everyday. I do have a date with my husband on Tuesday night. He went out

and bought me Willie tickets. This will be my second time I have seen

him this year. I really am excited.

There I posted something for you to read. Have a good night and I will write

again tomorrow

Sue AIH

Wisconsin

[Guest guest]

I am not getting many messages, maybe everyone is out enjoying the weather

or something. Lynn AIH

zjm@... wrote:

> From: zjm@...

>

> I could be mistaken but when I was waiting to be diagnosed they said my

> auto immune count went above 160 indicating an auto immune illness.

> After a liver biopsy was diagnosed with aih. I was just wondering if I

> am the only one or do you all see a great decrease in number of messages

> you are getting?

>

> Pa.

>

> ---------------------------

[Guest guest]

gg From: Albert Regarding 20% of the population!!

You have asked a very interesting Question. An important one, I would say.

In the first place, medical science does not comprehend the cause/causes of

Autoimmune Conditions. If it were understood, they could cure or prevent

the 80

autoimmune diseases.

Some debate is going on about the cause being a virous or

virouses by professional people in medicine

" The genetic predisposition alone does not cause the development of

autoimmune

diseases. "

This writer is piling one assumption on top of another " -- Garbage!

" It seems that other factors need to be present as well in order to initiate

the disease process " What other factors?? Does the author have a guess??

" " IT HAS BEEN DETERMINED BY A NATIONWIDE SCIENCTIFIC STUDY THAT NO LESS

THAN 30%

OF DOCTORS ARE A THREAT TO THE HEALTH OF THEIR PATIENTS. " " A FOLLOW-UP

SURVEY OF

100,000 PATIENTS SUPPORTED THE CONCLUSION OF THE STUDY.

MANY DOCTORS OBJECT, SAYING THAT THE INCOMPETENTS AMOUNT TO ONLY 25%.

Regards, Albert

At 14:51 29/08/99 EDT, you wrote:

>From: Lidawood@...

>

>And how did someone determine that 20% of the population has that genetic

>predisposition? gg

>

>Copied from AARDA:

> What is the family connection in autoimmune diseases?

> The ability to develop an autoimmune disease is determined by a dominant

>genetic trait that is very common (20 percent of the population) that may

>present in families as different autoimmune diseases within the same family.

>The genetic predisposition alone does not cause the development of

autoimmune

>diseases. It seems that other factors need to be present as well in order to

>initiate the disease process. It is important for families with members who

>have an autoimmune disease to mention this fact when another member of the

>family is experiencing medical problems that appear to be difficult to

>diagnose.

>

>---------------------------

[Guest guest]

Hi Sue, you lucky girl, I have been a big fan of Willies sense i was about 15 or

16. All those years I thought he was wearing a suit, because i never saw him on

tv or anywhere, and then one day he comes on tv and looks like a hippy, could

have floored me! He must be an old guy now, gee that was a lot of years ago.

One of these days I am buying tickets and having someone drive me to a concert,

I

think I would have a heart attack! Thanks for the note, Lynn

Roselle50@... wrote:

> From: Roselle50@...

>

> Lynn:

>

> I 'retire' and nobody posts anymore. I have to have something to read

> everyday. I do have a date with my husband on Tuesday night. He went out

> and bought me Willie tickets. This will be my second time I have seen

> him this year. I really am excited.

>

> There I posted something for you to read. Have a good night and I will write

> again tomorrow

>

> Sue AIH

> Wisconsin

>

> ---------------------------

[Guest guest]

Sue,

I had my daughter tested, only with the blood counts, and at that time she

showed increased enzymes. Turns out it was glandular fever, another test a

month later showed they had all returned to normal. Thank God.

I do intend having her tested every so often, worth a blood test I think.

SueB.

----------

> From: Roselle50@...

> LiverSupport-lonelist

> Subject: [ ] RE: TESTING YOUR CHILDREN

> Date: Saturday, 28 August 1999 15:22

>

> From: Roselle50@...

>

> Hi:

>

> I just want to know how many have had their children tested and what age

did

> you have it done? I thinking of having tested.

>

> Sue AIH

> Wisconsin

>

> ---------------------------

[Guest guest]

----------

> Sue,

Go for it girl!!! Go and have a great time on your " date " . You deserve it.

SueB.

[Guest guest]

What is and what causes glandular fever?

J

>From: " milko " <milko@...>

>Reply- onelist

>< onelist>

>Subject: Re: [ ] RE: TESTING YOUR CHILDREN

>Date: Mon, 30 Aug 1999 22:13:15 +1000

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>From: " milko " <milko@...>

>

>Sue,

>I had my daughter tested, only with the blood counts, and at that time she

>showed increased enzymes. Turns out it was glandular fever, another test a

>month later showed they had all returned to normal. Thank God.

>I do intend having her tested every so often, worth a blood test I think.

>SueB.

>

>----------

> > From: Roselle50@...

> > LiverSupport-lonelist

> > Subject: [ ] RE: TESTING YOUR CHILDREN

> > Date: Saturday, 28 August 1999 15:22

> >

> > From: Roselle50@...

> >

> > Hi:

> >

> > I just want to know how many have had their children tested and what age

>did

> > you have it done? I thinking of having tested.

> >

> > Sue AIH

> > Wisconsin

> >

> > ---------------------------

[Guest guest]

Lynn:

I really am a big fan of Willie . I just love this band the last

concert I went to in April was great. Three hours of music by him. I was

just floored that my husband would take me.

Sue AIH

Wisconsin

[Guest guest]

Sue,

You have a wonderful hubby. I can just imagine listening to Willie for 3

hours and letting all the tension fall away...

(AIH)

[Guest guest]

That is so great, have bunches of fun! Lynn

Roselle50@... wrote:

> From: Roselle50@...

>

> Lynn:

>

> I really am a big fan of Willie . I just love this band the last

> concert I went to in April was great. Three hours of music by him. I was

> just floored that my husband would take me.

>

> Sue AIH

> Wisconsin

>

> ---------------------------

[Guest guest]

----------

> J.

Glandular fever, well I'm not sure of the medical terms. But her symptoms

were extreme tiredness and pale in colour the glands in her neck and under

her arms were all swollen, severe headaches and apparently it affect the

liver too. There is no medications for it though, the only cure is time and

rest.

SueB.

[Guest guest]

Hi, Lida (?)

Our oldest son died from ALS in November 1997, the same week I was diagnosed

with AIH. He learned that he had ALS just a little more than two years before

he died. We took him to an ALS support group meeting in Seattle soon after his

diagnosis and it was there that I first heard that ALS can be an inherited

disease, but not always. There was a 17 year old girl at the meeting whose

mother had ALS and she'd just learned it was the " hereditary " kind. Our son's

doctors didn't test other family members because they said that they could tell

from testing him that he didn't have a genetic form of the disease. Recently,

however, I've read that ALS is now considered an autoimmune disease, which

would be different than saying that ALS itself is inherited. Hope I'm making

sense.

My understanding is that " autoimmunity " is the disease and ALS, AIH, PBC, MS,

Lupus etc., are all different forms of autoimmune diseases. So, if one family

member has an autoimmune disease, the chances increase that other family

members also will have one of the many autoimmune diseases, but NOT necessarily

AIH. One of our grandsons has juvenile onset diabetes, which is an autoimmune

disease, as is insulin dependent diabetes. What it boils down to is that we

have a more or less hyperactive immune system. This is ironic, because

basically it means that our immune system, which protects us from catching flu

everytime someone sneezes and from getting infections at the hint of a scratch,

is so aggressive and strong, it actually becomes our enemy. Apparently, the

immune system will inexplicably fail to identify an organ as " belonging " to us

and try to reject or " kill " it. Because those of us have one particular

autoimmune disease, we are physiologically susceptible to others. With AIH,

there are specific other diseases we might also get, such as Lupus and perhaps

PBC or PSC.

My own diagnosis of AIH was based on a number of factors. The primary way of

reaching the diagnosis was by eliminating the presence, either current or past,

of any form of Hepatitis. Since I was negative for A, B and C and probably for

other forms as well, yet I had all of the usual elevated labs seen in

Hepatitis, suspicion was pointed at AIH. The anti-smooth muscle factor, which

I don't understand, also was figured into the diagnosis. Plus the fact that I

wasn't an " at risk " person. Never was much of a drinker, never used drugs nor

had any other risky behavior in my past. When I became very ill from

apparently blocked bile ducts and an apparently non-functioning gallbladder

which was quite enlarged, my doctor ordered a liver biopsy, among other

procedures. Earlier CT scans and ultrasounds had already shown that I had

" fatty liver " though I had no history of obesity or alcoholism and wasn't even

overweight despite carrying around about 35 extra pounds of fluid. Turned out

my bile ducts and gallbladder were fine, just couldn't function because by then

I had end-stage liver disease. The biopsy showed grade IV cirrhosis and 3-4

inflammation. A surprise to everyone and certainly to me, since I also had no

jaundice.

Even with all that, the transplant center (Green Hospital at Scripps Clinic, La

Jolla, California) ran a large number of tests including gene testings to

confirm the diagnosis, which they apparently did since they then put me on a

liver transplant list.

I have a large family and I've advised all of our children and grandchildren to

have annual physicals and to ask their doctors to do a yearly LFT, just to be

safe. I also have told them to be aware that they MIGHT have genetic

predisposition to autoimmunity. Thus, if they get sick and there's a problem

getting a diagnosis, they should let their doctors know about the autoimmune

factor in the family tree.

It takes some of the fear out of having this hanging over our heads to

understand that as many as 70% of the population have some form of autoimmune

disease and many of them are not serious. My nephew recently had a sudden

attack of Bell's Palsy, a rare autoimmune, neurological disease, thought to be

triggered by a virus. He's already fully recovered though recurrence is

possible. It's not dangerous, just unsightly and unpleasant. One way of

looking at all this is to realize that those of us with AIH (for example) have

lived our lives with a very strong immune system and because of that, we very

well might be better physically equipped to deal with a failing liver than

someone who has spent most of their lives battling numerous chronic conditions

like diabetes or rheumatoid arthritis or MS.

Sorry if I ramble, but I thought Id take the opportunity to clarify my own

understanding of how this scary thing works.

Take care,

Geri

[Guest guest]

Welcome back Geri..

Some things come back to us from our past to haunt us...When I was in about

the 7th grade I had Bells Palsy...has never returned...but now I have 2 boys

with auto-immune disease... with UC and Tyler with Crohns,Rhuematoid

Arthritis,PSC and AIH...I have been paroblems the last 5 months and seen many

drs...The next step is for me to GI's for myself...I have had kidney problems

in the past and is something that is also going on again and have to have

repeat kidney surgery soon...Have to go to NY because they will not do the

surgery here in NJ...

Just more pieces to the puzzle...

Luanne Ty's mom

[Guest guest]

Geri,

Yes, AARDA's list of 80 autoimmune diseases lists two kidney diseases:

Anti-GBM nephritis

Anti-TBM nephritis

There are no definitions, just a long list. There may be more, but with all

the " greek " names, I'm not sure! Hard to decipher.

Also, best of luck with the CT scan!

(AIH)

[Guest guest]

Hi Luanne,

It's good to be back but I feel like I'm running a marathon most of the time.

I knew nothing about Bell's Palsy until my nephew got it. Have you had

reoccurances? My nephew called from Bosnia yesterday and gave us the good

news that he's fully recovered. Fortunatlee Date: Wed, 8 Sep 1999

16:30:57 EDT

From: BBNLU@...

Subject: Re:

Welcome back Geri..

Some things come back to us from our past to haunt us...When I was in about

the 7th grade I had Bells Palsy...has never returned...but now I have 2 boys

with auto-immune disease... with UC and Tyler with Crohns,Rhuematoid

Arthritis,PSC and AIH...I have been paroblems the last 5 months and seen many

drs...The next step is for me to GI's for myself...I have had kidney problems

in the past and is something that is also going on again and have to have

repeat kidney surgery soon...Have to go to NY because they will not do the

surgery here in NJ...

Just more pieces to the puzzle...

Luanne Ty's mom

[Guest guest]

Hi Luanne,

It's good to be back but I feel like I'm running a marathon most of the time.

I knew nothing about Bell's Palsy until my nephew got it. So lucky for you

that yours didn't come back. It sounds like absolutely the last thing a

young person should have to deal with. said that he couldn't close

one eye or even feel his mouth on that side. He called from Bosnia

yesterday and gave us the good news that he's fully recovered.

Fortunately, he's in a good location and he said five different Army

doctors saw him including one who had actually treated Bell's Palsy in the

past.

You really do have a heartbreaking situation to deal with, with two

children with such serious, frightening diseases. I'd be going out of my

mind. What kind of kidney problem do you have? Kidney problems scare the

heck out of me. There's been a lot of that in my family and I even have a

renal cyst right now but no one is very worried about it. I guess it just

stays the same size, which is just how I want it to stay, but I've had

blood in my urine for years and no one has ever been able to figure out

why. Are there any autoimmune kidney diseases that you know about? I

haven't heard any mentioned but it figures there must be. They thought my

Mom might have had one but no specific disease was ever mentioned. How in

the name of heaven are you going to deal with surgery, with your kids

needing so much special care? What about recuperation? I hope you have a

lot of support at home. I think you are a classic example of someone who

can't afford to get sick. Our kids were mostly healthy and I always felt

fortunate. Our youngest son had some rare degenerative disk syndrome when

he was very small, but it wasn't life threatening. I wonder now if it was

autoimmune. That was in the mid-70's and they didn't think in terms of

autoimmune much back then.

Hope it doesn't sound facetious, but you just have to keep on keepin' on.

My heart goes out to you.

Take care,

Geri

[Guest guest]

,

Thanks for the kidney disease information. They are yet more insidious

conditions that can creep up on you and become dangerous before you even

realize anything is wrong. I don't think I have a kidney problem despite

years of blood in my urine for no known reason, but my grandmother lost a

kidney when she was in her 40's and one of my Mom's kidneys basically

atrophied and died for no reason she was ever given. It's something to

think about. Could these things have been prevented? Would something like

Imuran have helped them? We know so little and what we learn is often too

late.

Take care,

Geri