Huntington's Disease Support Group

my mom has huntingtons and is in her final stages [14 years], and her father died of huntington's in the 70's. I'm being tested. I have MS.
My advise to you is have your mother get tested. If she is negative, that rules out you, all your siblings and your son and neices and nephews. One test. You can not get your son tested, they won't test anyone under 18. Good luck.

I would get tested. I know this is hard thing to do. I recently was tested my mother is the last stage of HD 20 (years) She is 63 years . My sister will also get tested soon. This effects everyone. You just can't stand knowing that are chilren might get this evil diesase. I cry everynight about this. God bless.

Hi
I know the decision to test is difficult . I have two kids with Hd I have always felt it was up to them to decide and they have decided to do it . I think I would rather know and be sure even if it means know the out come for other family members.But wait till you feel ready and have the support you need to help you ok lots of luck take care

Please get tested it is better to know and go from there .

MSinPA is right. Your mom's results are the key, so she needs to be tested. As a matter of fact, most testing facilities will not test you unless your mom shows up as positive. Your aunt's HD has nothing to do with you. The fact that a grandparent had HD does indicate a possibility, but HD does not jump generations, so have mom get tested. Then if she is positive, you should get the test, and so on down through your kids.

i agree with everyone here..you do need to know. my mom went through most of her life not wanting to know and then started showing symptoms when she was in her 50's. once tested and learned that the test was positive she went into a severe depression. my brother and chose not to wait. he was positive i was not. now we are wondering whether or not his children will have this too. my children praise God will not. most of my mom's siblings were diagnosed positive but mom was the only one who was able to have children. I will be praying for you..God will lead you in the way He thinks best

I dont know if I would want to get tested. It definetly is a personal decision. My father has it and he has 5 girls. Which 3 of us have children. None of us have been tested yet and dont know if we want to. Doesnt this hurt you in regards to insurance? I don't know if I want to know or not. I would love to have more children but dont know if that should happen without being tested. Don't you have to go through counseling etc before you get tested?

I think you should wait a while before making a decision. There are many other things to make sure you realize and/or consider before making such a big decision, such as what Jennie said about it affecting insurance. Some insurance companies won't cover you anymore if you get a postive result and then trying to obtain insurance thereafter is extremely difficult, so I hear.

I struggled with trying to decide if I wanted to be tested or not. I am only 21 right now, and my husband and I are expecting our first child. I worried to my wits end that our unborn child will be born with the gene in June. Then I had initially decided I was going to get tested. When I told my parents, they were quite upset. They insisted that I did not, but said that if I decided to get testing, that they would rather not know the outcome. They told me over and over again that they had a wonderful life not knowing. They didn't wonder every single day if my father was going to get it or not. For the first few weeks of their marriage, my mother found herself looking for signs, as this possibility was new to her, but as time went on, she began to learn to relax about it and she and my father lived a wonderful life not knowing and not caring if he was going to get it. When he did finally end up with it, they accepted it and moved on. Knowing for 20+ years beforehand if you are going to get it may only cause you 20+ years of dread and fear of the oncoming doom. It may cause you to worry about it more. But it depends on what type of person you are.

All that I ask is that you take plenty of time to think before making your decision. Once I waited a few weeks, I learned I wasn't ready to get tested anymore and it's a good thing that I waited a few weeks to decide.

And please do remember that it DOES affect everyone around you. It may not necessarily cause you to become depressed about your future, but that doesn't mean it will be the same for everyone around you. Your mother may become depressed finding out that you have it and what if she's not getting tested for a reason? Talk to her extensively about this.

It's personal but I don't think a young person should get tested unless they do it to decide whether to have kids. What's the point of knowing you have an incurable disease? I'm 53 so I thought I was pretty safe. Then my son became anxious about occasional finger movements and feared he had it. So I got tested for his sake and am negative. Now he won't have to live in fear.
Btw, my friend's daughter got tested at 19 and is positive. Her Mom tells me she is always depressed and it has ruined her life.
So many things to consider.

I totally understand how you are feeling. I have lost my Dad (at age 57 after 16 years with the disease) and my little brother (at age 33 after 8 years w/ the disease) and everyday I wonder if I should get tested. I have 3 teenage girls and worry what the outcome would be. It doesnt just effect me, it effects my whole family. If the test were to come back negative it would be the best gift in the world, but if it doesnt it could ruin so many lives before their time. Since there is no cure at this time or anything to control symptoms why would I want to do that to my daughters, it would be torture. My Dad and brother were both very suicidal after their results. I know that the guilt of knowing I passed this horrible disease on to them would eat me alive. I would not want to live. There are so many things to take into account when thinking about testing. I pray everyday that this disease will not destroy anymore family members. This has to be the most horrible thing I have ever witnessed. They were both way to young to leave this world.

Take care.
Liz