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Genetic testing
Wow, that is a tough one. It really is a personal decision. I personally will let my children decide when they are older. The way I see it is some of the pro's are- They will already know for sure one way or another what to expect, and can begin treatment as soon as needed, if needed. From what I can see the con's are- whether they get a positive result or not, just having the test done put's a permanent mark on their paperwork which can make it almost impossible to get desent insurance rates, if any insurance at all. But then they may not get the treatment they need when suffering with symptoms because they have not been tested. It almost seems like a vicious cycle. Tonight I just had my first talk with my 12 yr old step daughter about things that have been going on with me and this disease. Before tonight she didn't even know what HD was or that I have it. It is definitely something I would consider waiting until they are ready to talk about it and understand it.14 months ago
When i was considering having my testing done, I contacted the HDSA regarding the mark on my medical history. From what I was told, the mark does not go on your record for the test if you pay for it out of pocket and never use your insurance to cover any part of it. Now, if and when treatment is necessary, that is when they can make a record of it. That is what I was told, but if you are worried about that, I would consult a doctor you trust before any tests. If and when I have children, I will let them decide for themselves if they want to be tested though. I agree with Angela that you should speak to your children when they are ready and can understand what you are telling them. Just one more thing, obviously if you see any early manifestations of the disease, you should probably get the test done.14 months ago
I may be reading your post wrong, but i read it to say that your dad has HD and you do not carry the gene {since you said My dad had hd and I did not}? If I am reading it correctly, there is no reason for your kids to be tested - since you wouldnt carry the gene, neither will they-- but if I am reading it wrong, I strongly believe that they need to be at an age {adult} where they can choose themselves, then go through the proper chanels. I have a 4 and a 6 year old---I do know the gene status of my youngest {NEG} but not my oldest, when the time comes to discuss geneic testing w/ my oldest he will need to know the ins issues, emotional issues etc etc and he will have to decide on his own whether or not to be tested---that is such an individual decision-and each person has to wiegh the outcomes on thier own DCB14 months ago
Hi Tom, I too was wondering if you have had the test yourself or are just assuming you are negative because you are not symptomatic. If you are negative, your children will be also. But if you have tested positive then your children will be at at 50% risk. My children are at risk and untested at this time. They are 37 and 29. It is such a personal decision, I would never be the one to recommend that they be tested. They will know when it is right for them. They already have two children each, all born before we knew HD was lurking in the genes. So their decision will affect their families as well. Genetic counseling is essential I feel. An emotional minefield needs an experienced guide. All the best, Jaycee14 months ago
My parents would not let me test. They said that I could make that decision on my own when I turned 18. At 18 I didn't feel I was mature enough to handle what the test may bring. At 22 I got teste and it came back positive. I wanted to wait until I knew I could handle it. Maturity plays a huge role in it. If you don't have HD or have had a negative test result, your kids will not inherite it14 months ago
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Tom