I just found out yesterday that my father has Huntington's diease. I am 28 years old and have two children. My initital reaction was of course I would get tested, but now I am less sure. Can anyone share their reasons behind their decision on this matter? Thanks so much. Feel free to email me.

Meghan

Hi Meghan. Sorry to hear about your father's diagnosis. We had already had our first child when my wife heard the news that her estranged father had died from HD. We decided not to have anymore children so my wife didn't bother to be tested until her deteriorating health forced her to go to a neurologist. The BIG NEGATIVE of testing is that it is much more difficult to acquire insurance if you test positive.

However, I know one person that had so much anxiety about it that the only way she could calm herself was to test. She was convinced she had HD. She tested negative.

A big problem for at risk parents is that they see signs of HD in their children. Trust me, all kids act as if they have HD. <g>

My at-risk daughter who is now 19 thinks she wants to test but I'm sure she will talk herself out of it too. Since there isn't a cure or a proven treatment yet there isn't a whole lot you can do other than take supplements such as EPA that would be good for you even if you didn't have HD.

There are several "at-risk" individuals on HUNT-DIS that would be happy to share their reasoning behind not-testing. So if you don't get enough opinions here you can sign up for HUNT-DIS.

Good luck with your search for answers.

Steve

Hi Meghan,Sorry to hear about your Dad's diagnosis, but why would you want to run out and get Tested? You are only 28 years old and have 2 little children, I can maybe understand you getting tested once your children are grown and ready to embark on a life of their own, then of course you would want to be sure they were disease free. But Why Now? If you are not showing symptoms why Test? If you test now and find you have the gene, the only planning you will do is for your own Demise, which will provide you with a long miserable existence long after you have recieved your result and effectively ended your life.Leave it alone for now, say maybe get tested in 20 years, in the meantime Enjoy your life and your Children,and allow your Children to Enjoy their Mother, Worry Free.Just my Opinion though.Peace to you Meghan, come on over to Hunt-Dis and join the Family.

Hi Meghan!
Sorry to hear about your dad. I wish you all the best of luck. However, on the note about whether to test, let me clarify the insurance issue. My husband tested (positive) through a hospital here on long Island that is an HD testing center. This means they are actually familiar with the disease and the ramifications of testing. They provide thorough counseling prior to testing so you can weigh your options. After this, you can test ANONOMOUSLY as my husband did. This means the lab gets a fake name. Only the test center knew who he really was. We also paid cash to them and let them know never to release info on us without our consent. The center had a program at the time that even paid for some of the test! The pro of testing in our case was knowing that Rob is pre-symtomatic now but will get the disease in the future, thus giving us time to buy life insurance, etc. that would be difficult ($$$) after he begins to show symptoms. Good Luck, and as mentioned by others , HUNT-DIS is VERY HELPFUL for both info and emotional support! Love Heather

Hi Meghan

I was 27 when I found out my Dad also had HD. He is now 61 and is still going very well - still driving even. I'm now 31, so he tested positive about 4 years ago.

I am in the same boat as you, however, I am yet to have children. My husband and I were discussing it the other day and we are pretty sure we will have them anyway. We have decided to only have 1 child. We are going to discuss our options with the genetic clinic here in Sydney, Australia. I don't want to be tested for the same reasons others have mentioned. Don't rush into it if you are having doubts. I would LOVE to hear that I tested negative however I'm not sure how I'd react if I tested positive. I think my husband would be looking out for symtoms in everything I do and in my opinion, I would have a better life not knowing at this time.

I often get down about it and think I want the test but you need to sit down and weigh up the pros and cons. If I tested, who do I tell? My Mum has the worry of my Father and why do I want to burden her with the news I too will develop the disease.

My Mum's philosophy is "life's too short to stuff the chicken" and I am going to live by that!

Good luck and email me if you need to chat.

Karen