Dear Lady Cashel, my husband is phd and we found out the test results in March. Even though we both expected it to be, we were still in shock...my advice...Don't shut your family out! Do not try to handle this on your own! Talk with your family often about how you are feeling and come here for support.
If there is a chapter of the HD society where you live, become involved. As for feeling guilty,try not to. It is a waste of emotion and serves no purpose other than to feed depression. We cannot change the fact that we have our children or the fact that there is a positive result, so we must just love them and try to keep a positive outlook for them.
Learn as much as you can about supplements and the things you can do to stay healthy for as long as you can. This forum and the lighthouse ae excellent sources of information.
My heart really aches for you. I do know this..as a spouse. Talk! Get your feelings out. Do not push your family away trying to protect them.
Well...this is my two cents. I rarely post about issues, because I am fairly new and still learning, but this I have experience in. My husband decided he was going to protect us by shutting us out and driving us away....it worked. Sad for all of us.
So chin up. Learn what you can about how to stay healthy and take care of you and vent often (this is excellent place to do that)
My thoughts and prayers are with you.
Trish

Tracie, the two counts represent each gene. 31 is the normal gene and 44 is the HD gene. We each have two copies of the gene that produces the huntingtin's protein. Unlike a gene like eye color where only one gene, the dominant one, can express itself, both genes actually express themselves. So the normal gene is producing normal huntingtin's protein and the HD gene is producing the version with the extra CAG repeats.

Thanks Marsha. Though I think I read something about that somewhere, I have never heard it in "layman's terms". That really helps!

A little OT here, but I think it would be interesting to see the geneotype of someone who lived to be like 110.

I wonder if anyone has gene mapped the very elderly to see if there is any anatomical difference in their genes?

Tracey T,
"Fred you said your son's count is 49 and he is 13? Since he could not have legally tested at his age I was wondering how you know."

It's not Illegal. It's 'not recommeded'. In person, I am a very persuasive person All you need is a 'reason' and a doctor to order it.

It would be hard to find a doctor to order a test for non symptomatic children as it unethical to do so. One never knows what a parent may do with the information that may affect the child as an adult...or for that matter as a child. As a rule I think it is a good one and leaves testing to the child when it is of age to make it's own choices and own decisions.

Well Fred, yet another thing learned! I really appreciate the wealth of information that everyone is willing to share.

It's not that hard Eric. Doctors start in the book at A and end in Z.

We have to be comfortable with our doctors. We can pick and choose where our money goes.

I don't think Elvis or Anna Nicole had problems getting doctors did they?

It's not necessarily 'unethical'. It's not 'recommended'. Supplements aren't 'recommended' either by doctors

Sorry Tracy my husbands count 30/31 means the 30 is from his mother & the 31 is from his father.

His fathers count 31/44 means 31 is from his mother & the 44 is from his father.
Sorry didnt realise you were a "newbie"

I hope this helps
Julie

So did both your husband and his father inherit from their fathers, Julie?

Julie are you calling me at newbie!! LOL I guess I am : )

Thanks for the explaination. Though I have lived most of my life with this disease around me (and still do) I thought if I denied it for the last few years it would go away (haha). I am learning alot of information here as well as getting my mind expanded. I am trying to follow up each thing I hear with looking up a full explaination elsewhere. It has been a good thing for me personally.

This is a good site. Lots of information. Lots of support!

All ethic are guide lines Fred. It is not ethical test new drugs without full discloser of risks involved. In some places it may not be illegal. Ethics recommend that full disclosure be followed though not illegal, anywhere in the world.

HD has a well thought out set of ethics. Paramount to those ethics is the individual to be tested to have full knowledge of the test. They are to have proper knowledge of the implications arising from the test. They are to have proper support available when given the results of the test. No third party has a right to knowledge of the results of the test.

Testing a non symptomatic child violates all of these ethics that have been set forth. And they are ethics. And a doctor who violates them could be seen as unethical. If you have to be persuasive then you ask a doctor to violate what they have accepted as ethical in this case. Don't try to make it sound like these are just recommendations like the food pyramid. These are recommendations as to what is right and what is wrong.

Should you like to review internationally accepted guidelines for testing... that they regard as ethics in testing and which are accepted as the proper ethical conduct to be followed... here is the link.

[www.hdfoundation.org]

For those in the US this ethical comment through the NIH and the National Human Genome Research Institute under the the subtitle "Testing of Children".

[www.genome.gov]



Edited 1 time(s). Last edit at 08/04/2007 01:56AM by Eric.

JL,

My husband is in the intermediate range but yes my husbands father inherited it fom his father but unsure of his cag repeat as he was misdiagnosed & was in a mental home.

Tracy I hope I didnt affend you by calling you a "newbie" but you actually called yourself that on page 1.

You will learn alot of great information on this site.

Julie

Julie

I actually realized that after I posted! LOL <embarassed>

And it was just an attempt at a joke as I AM a newbie. I was just joshin' you.

Tracie