"Margaret Suran" wrote in message
ink.net...


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 am sorry that you find yourself in this terrible quandary. I believe that I
would want to know, but this is easy for me to say, as I do not have to do it.

Why did the doctor in Minneapolis suggest that you be tested? If you are found to
be a potential hypertrophic cardiomyopathy sufferer, are you certain that there is
no medication available, blood thinners or something like that, that would be
beneficial? I do not mean that there would be a cure, you said here is none, but
there may be something to slow down the progress or to make you more comfortable.

I am so sorry, Kimberly. Let us know what you decide to do and whatever it will
be, I know it will be the best choice for you.

First, thank you for your kind words, Margaret.

I think that things like Atenelol have the potential to slow it down a little, but
there's no guarantee it works.
The doctors at the Mayo clinic wanted all of us to be tested, as it runs in families,
and especially my sister and I as we were the only other ones born with a heart
murmur. (Both of my brothers were born with a murmur too). I have also had cardiac
arrhythmias from time to time, which is worrisome in and of itself. They aren't sure
there is a connection, from what they've told us. In fact, they're not sure why it
happens. They ask when they do the surgery if they can keep a piece of the heart
muscle they remove to send to pathology for testing.

Again, thank you.

kimberly

"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

On Sat 22 Apr 2006 01:57:51p, Thus Spake Zarathustra, or was it Nexis?

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?

Yes, I would want to know, and I would do the tests.

I don't much like mystery, surprise, and the unknown about anything, much
less my health.

I suppose it depends on one's general outlook.

--
Wayne Boatwright @¿@¬
_____________________

"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

"Kathleen" 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.


I would have the test. Knowledge is power. Although there is no cure for
the condition, the timely implantation of a pacemaker to correct
arrhythmia could extend both the quantity and quality of life.

Kathleen

I'm not sure what is the cause of f-i-l's arrhythmia, and it may be much
more benign than the condition you are referring to, but f-i-l has lived
with arrhymthimia with medication for many, many, many years, with all sorts
of other serious health problems.
Dee Dee

"Nexis" wrote in message
news:kNw2g.173736$bm6.85264@fed1read04...
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?
So given that it wouldn't benefit you to know, and may in fact cause
stress, would you do the test?


It seems to me, it would be just as stressful not knowing, maybe even worse
because of the uncertainty. At least if you knew, you would eventually come
to accept it.

Jen

"Nexis" wrote in message
news:BnA2g.173792$bm6.106373@fed1read04...

"Margaret Suran" wrote in message
ink.net...


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 am sorry that you find yourself in this terrible quandary. I believe
that I would want to know, but this is easy for me to say, as I do not
have to do it.

Why did the doctor in Minneapolis suggest that you be tested? If you are
found to be a potential hypertrophic cardiomyopathy sufferer, are you
certain that there is no medication available, blood thinners or
something like that, that would be beneficial? I do not mean that there
would be a cure, you said here is none, but there may be something to
slow down the progress or to make you more comfortable.

I am so sorry, Kimberly. Let us know what you decide to do and whatever
it will be, I know it will be the best choice for you.

First, thank you for your kind words, Margaret.

I think that things like Atenelol have the potential to slow it down a
little, but there's no guarantee it works.
The doctors at the Mayo clinic wanted all of us to be tested, as it runs
in families, and especially my sister and I as we were the only other ones
born with a heart murmur. (Both of my brothers were born with a murmur
too). I have also had cardiac arrhythmias from time to time, which is
worrisome in and of itself. They aren't sure there is a connection, from
what they've told us. In fact, they're not sure why it happens. They ask
when they do the surgery if they can keep a piece of the heart muscle they
remove to send to pathology for testing.

Again, thank you.

kimberly
Not to be a Pollyanna, but there are different murmurs. I was recently
diagnosed with a murmur, but doctor poo-poo'd it. Again, not to say that
yours is not serious. I recently had a thumping of my heart, but again the
doctor said it was not serious. Before I would have any surgery or biopsy,
I recommend at least two opinions, and two opinions of pathology.
Dee Dee

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


Just remember, it's not a preexisting condition if it's never been
diagnosed.


Bob

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



About 2 years ago I was diagnosed with a hereditary genetic disorder that
affects my hypothalamus. There is no 'cure' or treatment for the disorder
itself, mostly we just keep the symptoms in line.

Had I known this is to be the case I would not have pursued a diagnosis. I'd
spent years trying to deal with a set of mystery symptoms with the hopes of
putting an end to them and now that I found out what it is there is nothing I
can do about it.

It's done me no good to know.

--
..:Heather:.
www.velvet-c.com
Step off, beyotches, I'm the roflpimp!

Damsel in dis Dress wrote on 22 Apr 2006 in rec.food.cooking

I'd want to know. I wish there'd been a way for me to find out if I
had the evil breast cancer gene. Knowing that I was clear of danger
would have been wonderful.


Knowing one way or the other would put my mind at ease....Being sure beats
worrying over it. If you ain't got it that's good and go on with your
life...If you have it life style and hard life choices might have to be
made...

I know that If the posibility was there it would eat at me...Knowing would
simpify things I think.

--
-Alan

"Dee Randall" wrote in message
...

"Nexis" wrote in message
news:BnA2g.173792$bm6.106373@fed1read04...

"Margaret Suran" wrote in message
ink.net...


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 am sorry that you find yourself in this terrible quandary. I believe that I
would want to know, but this is easy for me to say, as I do not have to do it.

Why did the doctor in Minneapolis suggest that you be tested? If you are found
to be a potential hypertrophic cardiomyopathy sufferer, are you certain that
there is no medication available, blood thinners or something like that, that
would be beneficial? I do not mean that there would be a cure, you said here is
none, but there may be something to slow down the progress or to make you more
comfortable.

I am so sorry, Kimberly. Let us know what you decide to do and whatever it will
be, I know it will be the best choice for you.

First, thank you for your kind words, Margaret.

I think that things like Atenelol have the potential to slow it down a little, but
there's no guarantee it works.
The doctors at the Mayo clinic wanted all of us to be tested, as it runs in
families, and especially my sister and I as we were the only other ones born with
a heart murmur. (Both of my brothers were born with a murmur too). I have also had
cardiac arrhythmias from time to time, which is worrisome in and of itself. They
aren't sure there is a connection, from what they've told us. In fact, they're not
sure why it happens. They ask when they do the surgery if they can keep a piece of
the heart muscle they remove to send to pathology for testing.

Again, thank you.

kimberly
Not to be a Pollyanna, but there are different murmurs. I was recently diagnosed
with a murmur, but doctor poo-poo'd it. Again, not to say that yours is not
serious. I recently had a thumping of my heart, but again the doctor said it was
not serious. Before I would have any surgery or biopsy, I recommend at least two
opinions, and two opinions of pathology.
Dee Dee

It's not the murmur itself that is worrisome...it's that this disease seems to have a
connection to this particular type of murmur, at least in our family line. It doesn't
mean that I would get or have the condition, just that it increases the likelihood.

Even if diagnosed, I wouldn't necessarily have to have surgery, at least not for some
time to come. One brother needed it within a year, the other is going on 5 years
without it. It's all dependent on the person and their health and the progression of
the disease in their system.

kimberly

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?

Absolutely.


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.

HCM isn't always hereditary. My Mom developed it after a HA at 40 -
she lived to be 79.


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?

Yep.


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

The thing is, all diseases and influence your overall health and
influence the deveklopment and severity of other diseases. I want to
know - I have been tested for certain genetic anomalies that run
concurrent with a syndrome I have (autoimmune issues and blood-clotting
factoers). I now know my genotype for the traits and what to expect -
how the mutations affect my systems. I have a LOT more peace of mind
knowing that I am affected and how to deal with the repercussions.
Good luck!

-L.

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
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?

Yes. I'd have the tests, in the same way I already have regular
mammograms because my sister and aunt had breast cancer, and I have
colonoscopies because my mother died of bowel cancer.

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.

"Nexis" wrote in message
news:g7E2g.173850$bm6.87842@fed1read04...

Even if diagnosed, I wouldn't necessarily have to have surgery, at least
not for some time to come. One brother needed it within a year, the other
is going on 5 years without it. It's all dependent on the person and their
health and the progression of the disease in their system.

I would rather know all there is to know about it, if it were me.
Sometimes, the fear of something can be worse than the actual knowledge and
coping with it.

Whatever you decide Kimberly, I send you all my best wishes and hopes for a
happy outcome.

God bless

Ophelia

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'd want to know.

Pastorio