Huntington Disease Lighthouse Families

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Testing

Posted by vtgirl 
Testing
May 23, 2016 08:19PM
Is it true that you can take a blood test for Huntingtons and get the results back in as little as one day?
Re: Testing
June 09, 2016 02:39PM
VTgirl, I have not heard of that. When I had my blood test (about 8 yrs. ago) it was sent to two different facilities to ensure accuracy. I think it took a couple or more weeks to get the DNA results. They do not give you the results over the phone. In my case not what I wanted to hear.
All the best
Rich
PS Are you a VTgirl as in GO Hokies?
Re: Testing
June 09, 2016 06:31PM
VTgirl,
No responsible doctor would ever just test you without counseling and assistance! You need to go to an HD center of excellence if there is one in your area, so that you can get all of the help you may need. They have psychologists, social workers, neurologists, physical therapists, speech therapists, etc, all of whom specialize in HD. If there is not one near you, you should find a genetic counselor.

You are typically required to go through counseling before and after you are tested. The process can take several months as they prefer to give you time after the initial appointment to consider whether or not you really want to go through with testing. Then you go in and have the test. Then they set up another appointment during which you will get the results. There is usually follow-up appointments as well. They typically require that someone accompany you to the appointments (usually someone that is not at risk for HD themselves).

Make certain that you are in a good place (not dealing with lots of other stress in your life) and that you have a support system in place before you test. Also, you should get life insurance BEFORE you test, because if you get a positive result, you will not be able to get life insurance.

There are many things that a good counselor can advise you about before you get tested. This is not something you should do in haste.

Good luck!
Re: Testing
June 10, 2016 11:14AM
I second what schydowg said. That is exactly what I went through. They also advised about the insurance and also disability ins. Getting tested is not to be taken likely. You can not "unknow" the result! For me I did it for my children but know 8 years later I have still not found the strength to tell them. How does one tell a 20 something child that their Dad is at risk to come down with a deadly disease for which there is no cure and no treatment and oh by the way you have a 50% chance of already having it too!!! And if so I gave it to you!! Ugh.
Re: Testing
July 11, 2016 02:52PM
I got mine that way but it was 20 years ago by phone with a psychologist in the room. I can't say it made a huge difference since I was gene positive. My kid had the tests and was gene negative.
Re: Testing
July 20, 2016 09:59PM
please tell your children (at least the one who got married) that they are at risk. They have the right to know so that they can make plans for their future. What if they want to have children? if they are at risk, they could go through IVF so that their child won't inherit it. but if they pass it on and find out that you knew. can you imagine what that will do to your relationship? I know people in that situation and they will never forgive their parents for not telling them. They have cut all ties. They are adults; they have the right to know.
Re: Testing
July 22, 2016 09:01AM
Just curious, but I would think that there is still a benefit to counseling after the news, even if it is good news. Maybe not on the level of counseling required for bad news (gene positive), but I know some people who suffer significant survivor's guilt while seeing their sibling affected by the disease. Just something to think about. As we know, HD is a family disease and it doesn't just affect the person with HD. Loved ones, family, friends, and caregivers are all affected.
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