Nexis wrote:

I'd like a few opinions if I may....

If there was a chance that you had a hereditary disease that you could find with a
few tests, but is incurable....would you do the tests?

I have 2 brothers that have hypertrophic cardiomyopathy. It's a hereditary condition
that involves a thickening of the heart muscles. Not only do they thicken, which
causes the heart to have to work harder to pump the oxygenated blood, but the cells
are in disarray, which eventually causes the affected segments to become unstable,
causing erratic heart rhythm.

As many of you know, I went to Minnesota a couple months ago for my brother's heart
surgery. At that time the doctor suggested the remaining siblings be tested. At
first, I was intending to do just that...at least, until I began reading up on it.
Basically, what I learned is, if it is going to affect you, it is just simply going
to. There's nothing really preventative you can do, not until it is bad enough to
require treatment.
So given that it wouldn't benefit you to know, and may in fact cause stress, would
you do the test?

Thanks for anyone who responds, and no, I'm not looking for anyone to make my choice
for me...I'd just like to know what others would do.

kimberly



I would think the _not_ knowing would be more stressful than knowing....

Question, if it's genetic, it it Autosomal or sex linked? Is it dominant
or recessive? Knowing those two factors would give you the statistical
odds of you having it.

Om

Nexis wrote:


Thanks for anyone who responds, and no, I'm not looking for anyone to make my choice
for me...I'd just like to know what others would do.


I would have the test. I would want to know. Hopefully it will be
negative. Sorry you have to make this decision.

--
Cheers
Chatty Cathy

In article kNw2g.173736$bm6.85264@fed1read04,
"Nexis" wrote:

I'd like a few opinions if I may....

If there was a chance that you had a hereditary disease that you could find
with a few tests, but is incurable....would you do the tests?

This is such a personal issue. I am thankful that I am not confronted
with that kind of situation. If it were me, I would only do the test if
it allowed me to take actions to prolong my life that I would not have
to take if the diagnosis was negative.

On Sat, 22 Apr 2006 13:57:51 -0700, "Nexis" wrote:

I'd like a few opinions if I may....

If there was a chance that you had a hereditary disease that you could find with a
few tests, but is incurable....would you do the tests?

I have 2 brothers that have hypertrophic cardiomyopathy. It's a hereditary condition
that involves a thickening of the heart muscles. Not only do they thicken, which
causes the heart to have to work harder to pump the oxygenated blood, but the cells
are in disarray, which eventually causes the affected segments to become unstable,
causing erratic heart rhythm.

As many of you know, I went to Minnesota a couple months ago for my brother's heart
surgery. At that time the doctor suggested the remaining siblings be tested. At
first, I was intending to do just that...at least, until I began reading up on it.
Basically, what I learned is, if it is going to affect you, it is just simply going
to. There's nothing really preventative you can do, not until it is bad enough to
require treatment.
So given that it wouldn't benefit you to know, and may in fact cause stress, would
you do the test?

Thanks for anyone who responds, and no, I'm not looking for anyone to make my choice
for me...I'd just like to know what others would do.

kimberly

I would have the test only if:
a. something could be done to prevent or slow the condition, OR
b. it would affect my decision to have children, OR
c. getting a positive result would NOT affect my ability to get or
retain health insurance in the future, OR
d. symptoms develop that require treatment.

In the absence of a, b, or d, the only beneficial result would be the
peace of mind from a negative test. So I would have to balance "c"
vs. getting the test for the chance of peace of mind. If I didn't
have the test, I'd worry for sure and follow news of treatment, etc.
closely, but would retain some hope that I didn't have it. If the
test came back positive, I'd worry much more, but now the hope would
only be that a cure would be discovered.

When there is nothing to be done and there are some negatives to a
test, I personally can live with the uncertainty of not knowing.

Sue(tm)
Lead me not into temptation... I can find it myself!

Curly Sue wrote:
On Sat, 22 Apr 2006 13:57:51 -0700, "Nexis" wrote:

I would have the test only if:
a. something could be done to prevent or slow the condition, OR
b. it would affect my decision to have children, OR
c. getting a positive result would NOT affect my ability to get or
retain health insurance in the future, OR
d. symptoms develop that require treatment.

In the absence of a, b, or d, the only beneficial result would be the
peace of mind from a negative test. So I would have to balance "c"
vs. getting the test for the chance of peace of mind. If I didn't
have the test, I'd worry for sure and follow news of treatment, etc.
closely, but would retain some hope that I didn't have it. If the
test came back positive, I'd worry much more, but now the hope would
only be that a cure would be discovered.

When there is nothing to be done and there are some negatives to a
test, I personally can live with the uncertainty of not knowing.

I think I'm with you on this one. If there is nothing to be gained
from the knowledge, why have it? I'm reminded of Arlo Guthrie's
decision to not be tested for Huntington's when that test became
available. IIRC, his siblings did get tested.

Gabby

"OmManiPadmiOmelet" wrote in message
...
Nexis wrote:

I'd like a few opinions if I may....

If there was a chance that you had a hereditary disease that you could find with a
few tests, but is incurable....would you do the tests?

I have 2 brothers that have hypertrophic cardiomyopathy. It's a hereditary
condition that involves a thickening of the heart muscles. Not only do they
thicken, which causes the heart to have to work harder to pump the oxygenated
blood, but the cells are in disarray, which eventually causes the affected
segments to become unstable, causing erratic heart rhythm.

As many of you know, I went to Minnesota a couple months ago for my brother's
heart surgery. At that time the doctor suggested the remaining siblings be tested.
At first, I was intending to do just that...at least, until I began reading up on
it. Basically, what I learned is, if it is going to affect you, it is just simply
going to. There's nothing really preventative you can do, not until it is bad
enough to require treatment.
So given that it wouldn't benefit you to know, and may in fact cause stress, would
you do the test?

Thanks for anyone who responds, and no, I'm not looking for anyone to make my
choice for me...I'd just like to know what others would do.

kimberly

I would think the _not_ knowing would be more stressful than knowing....

Question, if it's genetic, it it Autosomal or sex linked? Is it dominant or
recessive? Knowing those two factors would give you the statistical odds of you
having it.

Om

It's believed to be dominant inherited, and as I mentioned in another post, there are
also other factors in our particular family tree.

I'm about 95% sure I will have the tests, but I do think after reading the responses
that I might wait until after I have insurance again.

kimberly

Nexis wrote:

"OmManiPadmiOmelet" wrote in message
...

Nexis wrote:


I'd like a few opinions if I may....

If there was a chance that you had a hereditary disease that you could find with a
few tests, but is incurable....would you do the tests?

I have 2 brothers that have hypertrophic cardiomyopathy. It's a hereditary
condition that involves a thickening of the heart muscles. Not only do they
thicken, which causes the heart to have to work harder to pump the oxygenated
blood, but the cells are in disarray, which eventually causes the affected
segments to become unstable, causing erratic heart rhythm.

As many of you know, I went to Minnesota a couple months ago for my brother's
heart surgery. At that time the doctor suggested the remaining siblings be tested.
At first, I was intending to do just that...at least, until I began reading up on
it. Basically, what I learned is, if it is going to affect you, it is just simply
going to. There's nothing really preventative you can do, not until it is bad
enough to require treatment.
So given that it wouldn't benefit you to know, and may in fact cause stress, would
you do the test?

Thanks for anyone who responds, and no, I'm not looking for anyone to make my
choice for me...I'd just like to know what others would do.

kimberly

I would think the _not_ knowing would be more stressful than knowing....

Question, if it's genetic, it it Autosomal or sex linked? Is it dominant or
recessive? Knowing those two factors would give you the statistical odds of you
having it.

Om


It's believed to be dominant inherited, and as I mentioned in another post, there are
also other factors in our particular family tree.

So Autosomal dominant?


I'm about 95% sure I will have the tests, but I do think after reading the responses
that I might wait until after I have insurance again.

That would be very wise. ;-)


kimberly



Sending positive energy your way that the testing comes out negative!!!!!!

Cheers!
Om

"Nexis" wrote in message
news:SfR2g.173930$bm6.99752@fed1read04...

"OmManiPadmiOmelet" wrote in message
...
Nexis wrote:

I'd like a few opinions if I may....

If there was a chance that you had a hereditary disease that you could
find with a few tests, but is incurable....would you do the tests?

I have 2 brothers that have hypertrophic cardiomyopathy. It's a
hereditary condition that involves a thickening of the heart muscles.
Not only do they thicken, which causes the heart to have to work harder
to pump the oxygenated blood, but the cells are in disarray, which
eventually causes the affected segments to become unstable, causing
erratic heart rhythm.

As many of you know, I went to Minnesota a couple months ago for my
brother's heart surgery. At that time the doctor suggested the remaining
siblings be tested. At first, I was intending to do just that...at
least, until I began reading up on it. Basically, what I learned is, if
it is going to affect you, it is just simply going to. There's nothing
really preventative you can do, not until it is bad enough to require
treatment.
So given that it wouldn't benefit you to know, and may in fact cause
stress, would you do the test?

Thanks for anyone who responds, and no, I'm not looking for anyone to
make my choice for me...I'd just like to know what others would do.

kimberly

I would think the _not_ knowing would be more stressful than knowing....

Question, if it's genetic, it it Autosomal or sex linked? Is it dominant
or recessive? Knowing those two factors would give you the statistical
odds of you having it.

Om

It's believed to be dominant inherited, and as I mentioned in another
post, there are also other factors in our particular family tree.

I'm about 95% sure I will have the tests, but I do think after reading the
responses that I might wait until after I have insurance again.

kimberly
Just a word: Sometimes insurance will not cover anything that might hint of
genetic testing or even checking out to see if you have a certain disease or
proclivity when there are no actual symptoms. This might even make a
difference in the insurance company you choose, if you have that option.
Dee Dee

"Dee Randall" schreef in bericht
...

"Jke" wrote in message
...


When you apply for insurance, don't many/most companies ask for family
history?

A few questions, but not in much detail.

Everytime I go to a new doctor, I'm asked for my family history.

I'm not, unless there is a specific reason.They rarely do a full amnio
(?) here. The GP knows a lot about you, and when you are referred to a
specialist MD, the GP wirtes down any relevant info on the referral. From
experience, I know it can be different in other countries.Different
medical cultures, but also different systems.


Dee Dee

From my experience they will take a history for numerous tests, as well,
even though your own doctor has prescribed the test.
If you go to the hospital for any procedure, for instance at Georgetown
University Medical Hospital and also at Johns Hopkins, not only will they
take your history once, but you might get 2-4 other interns that will come
in and interview you and take your history.


I like that thouroughness. Although I trust my drs, it is easier to trust
them when it's visible t me what they are thinking/doing.

I'm not saying that all of the facts go into one big data base to be used
or checked in your insurance requests;

That woudln't be the case here, either. But when filing out an appliation
for insurance, you are obliged to tell the truth by contract. If you lie and
they find out, the preexisting condition will not be covered anymore. You
can't lie about what you don't know.

but I don't think even if it were to
go into a data base, it wouldn't keep me from being upfront with my data,
nor would I decline taking a test for that reason -- who knows, it may
save one's life.
Dee Dee

I see your point and I do agree lying about health issuea can be bad for you
health. I was talking about possible finacnieal consequnences because I
didn't necessarily see any medical consequences in the case of this
particular disease, as there is no prevention.

Jke wrote:
I wouldn't get the test since there is no prevention for the disease.
But I would keep a closer eye on any possible symptoms.

And I'd always have the option ot change my mind and get the test
after all.

In this country, knowing you have a disease like HIV can make it more
difficult to get certain types of insurance (or at least more
expensive). You have to tell the company when you apply for the
insurance.

It depends on the type of insurance you are purchasing and whether or not it
is offered as "group" insurance through an employer or if you are buying
individual policies. In the case of health insurance, most large employers
offer health coverage without pre-existing condition exclusions and no
medical questions are asked. This is because the spread of risk (the
concept on which insurance is based) with a larger group of insureds goes
down exponentially. With individual health policies, the underwriting
guidelines are much more strict and often medical records and/or a medical
examination is required.

As for life insurance, in TN, if you misrepresent any existing health
condition on your application (and the OP would have to already have been
diagnosed with this condition to have misrepresented herself), if the
insured goes 2 years without being discovered *or* filing a claim (which of
course, with life insurance would mean the insured died) the insurance
company cannot exclude coverage for it. Weird, but true.

Jill ---licensed life, accidental death/dismemberment and health agent

Dee Randall wrote:
"Nexis" wrote in message
news:RoA2g.173793$bm6.126679@fed1read04...

"Dee Randall" wrote in message
...

"Jke" wrote in message
...
I wouldn't get the test since there is no prevention for the
disease. But I would keep a closer eye on any possible symptoms.

And I'd always have the option ot change my mind and get the test
after all.

In this country, knowing you have a disease like HIV can make it
more difficult to get certain types of insurance (or at least more
expensive). You have to tell the company when you apply for the
insurance. If the disease is rare enough, it won't be asked about
explicitly on the application form. But there might be a general
question about health risks. If you have not been told you have a
certain disease, you won't have to tell them you are at a higher
risk than average.

I don't know if that would apply in your situation.
When you apply for insurance, don't many/most companies ask for
family history? Everytime I go to a new doctor, I'm asked for my
family history. Dee Dee

Dee,

The last time I applied, they asked about my parents, but not my
siblings, which I thought odd, but didn't press the issue.

kimberly
Interestingly, I have had them ask only for my parents' history.
OTOH, I have had them ask about both parents and siblings. Perhaps
because I am older, I don't know.
Insurance and DNA records are a concern, but knowing about one's own
health is paramount and a concern for your children if you have any.
Dee Dee

I'm not aware of a central database in the U.S. which is used to gather
individual health data to prevent someone from getting life or health
insurance.

Jill

"jmcquown" wrote in message
. ..
Jke wrote:
I wouldn't get the test since there is no prevention for the disease.
But I would keep a closer eye on any possible symptoms.

And I'd always have the option ot change my mind and get the test
after all.

In this country, knowing you have a disease like HIV can make it more
difficult to get certain types of insurance (or at least more
expensive). You have to tell the company when you apply for the
insurance.

It depends on the type of insurance you are purchasing and whether or not
it
is offered as "group" insurance through an employer or if you are buying
individual policies. In the case of health insurance, most large
employers
offer health coverage without pre-existing condition exclusions and no
medical questions are asked. This is because the spread of risk (the
concept on which insurance is based) with a larger group of insureds goes
down exponentially. With individual health policies, the underwriting
guidelines are much more strict and often medical records and/or a medical
examination is required.

There are many insurance policies written for companies that do not fall
within the larger employers and the individual health policies wherein could
lie a problem with obtaining health insurance for the individual.
Dee Dee

It depends on the type of insurance you are purchasing and whether or not
it
is offered as "group" insurance through an employer or if you are buying
individual policies. In the case of health insurance, most large
employers
offer health coverage without pre-existing condition exclusions and no
medical questions are asked. This is because the spread of risk (the
concept on which insurance is based) with a larger group of insureds goes
down exponentially. With individual health policies, the underwriting
guidelines are much more strict and often medical records and/or a medical
examination is required.

As for life insurance, in TN, if you misrepresent any existing health
condition on your application (and the OP would have to already have been
diagnosed with this condition to have misrepresented herself), if the
insured goes 2 years without being discovered *or* filing a claim (which
of
course, with life insurance would mean the insured died) the insurance
company cannot exclude coverage for it. Weird, but true.

Jill ---licensed life, accidental death/dismemberment and health agent


Intersting reading, Jil.. It is somewhat different from the sitaution here,
and I hope it can be helpful to the OP and others here to boot. I find it
interesting to read because I am not familiar with these things in the US. I
find such things can tell you a lot aout customs in other countries,
including some of the reasoning tha is common in other cultures.

In article kNw2g.173736$bm6.85264@fed1read04,
"Nexis" wrote:

I'd like a few opinions if I may....

If there was a chance that you had a hereditary disease that you
could find with a few tests, but is incurable....would you do the
tests?

I wouldn't. If it is incurable, there would be no point to me. Now,
if I started developing symptoms, I'd see what could be done to
alleviate that, and I would watch the news on that disease to see if
some cure was being created, but otherwise, I'd live my life as well as
I could and not worry about it. Since it is hereditary, when your kids
are old enough to care or are getting married or something, I'd remind
them of it, so they have the option to test if they wish to do so.

Regards,
Ranee (who also does not do any of the screening for possible
abnormalities that cannot be corrected in babies when I'm pregnant)

Remove do not & spam to e-mail me.

"She seeks wool and flax, and works with willing hands." Prov 31:13

http://arabianknits.blogspot.com/
http://talesfromthekitchen.blogspot.com/

In article ,
(Kathy in NZ) wrote:

It won't stop you getting the disease, but it will catch it in the
early stage. Your chance of recovery or a longer life are maximised.

But this is incurable. If you start developing symptoms, the best
they can do is treat the symptoms, as I understand it.

Regards,
Ranee

Remove do not & spam to e-mail me.

"She seeks wool and flax, and works with willing hands." Prov 31:13

http://arabianknits.blogspot.com/
http://talesfromthekitchen.blogspot.com/