Your medical future...

Apple_Fan_Boy · #1 Jun 4, '12, 6:42 am

If you were given the chance to know what your medical history in years to come has in store for you, would you want to know?

Would you want to know what illnesses would come your way?
Would you want to know what awaits you in 5...10... 15... 20 years from now?

TheRealJuliane · #2 Jun 4, '12, 6:48 am

No thanks.

Myqyl · #3 Jun 4, '12, 7:15 am

I'll pass

Apple_Fan_Boy · #4 Jun 4, '12, 7:34 am

Sorry for the short post, I didn't give all the details.

In the prayer intentions forum, I have quite a few threads started for my 6 yr old son.
He has been diagnosed with a genetic disorder but the doctors have not been able to pinpoint the exact one.

He has been thru an extensive battery of exams/MRIs/blood work... you name it, he has most likely done it. And still, the doctors come up empty. Empty in that while though it is a genetic disorder, the exact one is unknown.

Our next step is a full genetic testing for my son, myself, and wife.
This full genetic test will let us know exactly what is in store for us in the future medically.
The test consists of consultation with a specialist for either 3 hours or meeting 3 times at 3 hrs at time for a total of 9 hrs... one of the two.

So as the parents, we have the option of knowing what is in store for us.
We don't have an option of knowing about our son. We will be told everything that the future holds for him medically.

From what the specialist has told us so far, parents at first want to know about them but afterwards, they are mess when they know what waits in store. We were told that every time, parents say they can handle the news but when push comes to shove, it was to much for them to bear.

So, what do you do?

TheRealJuliane · #5 Jun 4, '12, 8:02 am

It depends on what the possible medical treatments are. It depends upon what the current medical treatments are. It depends on what specific handicaps my child has and what is the prognosis for the future if we DON'T find out exactly what genetic disorder he has.

I think it is a very heavy burden for parents to know this. But if you have to know in order to seek treatment for your child, to make his life better, to stop him from having to suffer, then it may be a cross you have to bear.

I would not want to be in your situation, as I am an anxious person by nature and background. It would worry me to death to know the future for myself and my children.

Please seek spiritual guidance from your priest, all through this process.

You will be in my prayers.

**GEddie** · #6 Jun 4, '12, 8:02 am

It's enough to bear that one day my eyes will roll back into my head; I have no need to trace the processes in my body that will make that happen.

ICXC NIKA

aloe · #7 Jun 4, '12, 10:40 am

I would, especially if I had the opportunity to change it based on what I did today. I tend to view health that way anyway in the lifestyle choices I make, for instance, making healthy choices daily to avoid medical problems in the future.

twk001 · #8 Jun 4, '12, 10:59 am

yes, i believe i would. not that i DON'T live every day to the fullest, but i DO miss a lot of the little things because life is happening.

i'm adopted and right now discerning having my records unsealed by a judge so that i can find out my birthparent's medical situations, and so that i can get genetic testing to see if I carry the breast cancer gene. if i do, my husband and I have already agreed that a total mastectomy will happen ASAP. i know all of the statistical data and such...

i think i would want to know especiall with certain diseases because if there are preventative lifestyle changes or off-warding drugs that could be started to prevent the disease, i would want to at least try!

Eleanor61 · #9 Jun 4, '12, 11:51 am

I have a genetic disorder, Charcot Marie Tooth, or hereditary sensory motor neuropathy. It is like MS or muscular dystrophy, only it is a muscular atrophy, the nerves die first, then the muscles. Feet and legs then hands and arms. It is progressive, but no one can predict the rate at which it will progress. I have passed it on to my eldest son (27) at least, not sure yet whether my other two biological children have it.

It is a slowly crippling disorder but not life threatening, and the age of onset and prognosis vary wildly.

I am glad that I did not know about it before I had children because I would not have wanted that conscious sense of responsibility. I would, however, like to know how quickly it will progress because we need to make decisions about disability friendly home renovations. Unfortunately it is impossible to know that. I am 50.

Apple_Fan_Boy · #10 Jun 4, '12, 4:49 pm

Quote:

Originally Posted by aloe

I would, especially if I had the opportunity to change it based on what I did today. I tend to view health that way anyway in the lifestyle choices I make, for instance, making healthy choices daily to avoid medical problems in the future.

This was my thinking as well until I was told that there was a very good chance that changing your lifestyle (eating/excercise/etc...) would not make a difference.

Kouyate42 · #11 Jun 5, '12, 9:57 am

Yes, I would likely wish to know. I've never actually met many of my family (either because of their location or they've died), and I know little about any medical problems that might present a problem. This has been a major problem when doctors and the like ask me my family medical background.

Apple_Fan_Boy · #12 Jul 7, '12, 7:36 am

Hi everyone.

Sorry to bump such an old thread but I wanted to give an update.

We received a letter in the mail letting us know we were selected for this genetic testing.
Two ways that I know of to get this testing is you pay out of pocket or you get selected and it is free.

This is starting to feel real now. As my wife was reading the acceptance letter to me, my heart sank. I know this is the best for my son but at the same time it is a helpless feeling that you'll know what is coming down the line and there is nothing you can do.

I'm scared of the unknown.

taylormcbee · #13 Jul 7, '12, 6:05 pm

No , I don't want to know , knowing would predispose us to worry which According to ST. Matthew's Gospel Christ says in verse 31 of chapter six do not worry. The embolism to the our father at mass is asking the lord to protect us from all fear and anxiety, knowing , would go against this, espically if it caused us to worry. on the other hand if someone was doing something self destructive and found out he would stay healthy what incintive would he have to stop it.

EasterJoy · #14 Jul 7, '12, 6:26 pm

Quote:

Originally Posted by Apple_Fan_Boy

This full genetic test will let us know exactly what is in store for us in the future medically.

No, it will not. It will let you know what your risks are.

Did you know that about 5% of the population has serious bulges in the blood vessels of their brains that could burst and give them a crippling cerebral hemorrhage? Before the advent of techniques such as MRI, this was not widely known, but it is so. There is nothing you can do if you know you have one; nothing, that is, except to know that if you get a very very bad headache, you could save your brain by getting to a hospital right away. You can also know that you will probably die from something else before that risky blood vessel ever gives you a bit of trouble.

If you decide to learn these things, resolve that you will take them as possibilities, not as predictions. Many people will be in your same boat, but just won't know it, and many of you will suffer no ill fate from your genetic vulnerability. Use the knowledge if you learn it, but don't let it own you.

Also, ask your doctor about the possibility of putting the information found in the genetic testing in your medical charts, so your doctors can know about it without revealing it to you directly when there is nothing that can be done with the information.

Z1Z2 · #15 Jul 7, '12, 8:42 pm

Quote:

Originally Posted by EasterJoy

No, it will not. It will let you know what your risks are.

What a good point! My first thought was that I would not want to know, but if testing shows risks and not outcome, it really would be useful to know. If I had an elevated risk of heart disease, for example, then I could take eating better and exercising more seriously.