I just wanted to introduce myself. I kind of wonder why I didn't register here earlier, because I don't believe anyone would be able to relate or understand me better than perhaps the people in this community.
My mother is diagnosed with Huntington's Disease, and for a long while, I had a very hard time believing that. As an adolescent, I was way too confident in the notion that perhaps my mother is behaving strangely from strong depression - which can surely be confused with the symptoms of this disease, because the symptoms can be just as extreme. She had no friends, she stayed at home far too often. Her kids, including myself, barely spoke to her. It would drive anyone to madness.
But after going away for college, which was a decision I believe saved me from going crazy, I was able to better see what it is my family went through. I was able to come to terms with what has happened to my family. And after falling in love with a guy that I'm so incredibly happy to be with, it hit me that I'm a possible candidate of someone whose future can possibly be extremely altered. And that thought changed my mindset completely.
I've been struggling to get tested for huntington's disease for quite some time now. The professionals at the center keep pushing it off because of my age and their concern with my coping strategies. But everytime my boyfriend mentions the future, I am brought to the thought... what if my future would be completely different? What if he wouldn't be able to be with me anymore? What if by the age of mid-thirties (which is when my mom started to progress) I would start to slowly lose myself? That changed everything. I'm currently in the process of trying to get the program on track but I thought I'd join to just get a better touch with this process. Thank you for reading.

Welcome!!! I understand the differering views on getting tested..I can see both sides. But if you do ever decide you're going to test, first make sure to have the insurance in place (such as disability, long term care, life etc.). It doesn't always make sense for everyone to to life insurance for example. But it's better to get it and then cancel rather than testing + and then making it impossible to get. There are a lot of older posts here (you can search through them) dealing with this issue (and many other issues too!) Glad to hear you've gone to college and met a great guy.

Welcome to the forum.

18 year old Kristen Powers from Chapel Hill NC publicly tested.

[www.usatoday.com]

It drew me to your post when i saw bella s as my daughter is a bella s. I am 39 and found out about a year ago that my mother had huntingtons. I struggled also and still struggle about being tested but have so far decided not to. My daughter is 4 years old and i am selfishly thankful i didnt know before she was born that i was at risk as i would have had to make a decision on whether or not to have her. I will also say that even though my mother has been diagnosed, i am not sorry i was born and love her dearly. I truly feel for you and understand what you are going through. I pray for you and all of us and remember none of us (with or without huntingtons) know what tomorrow brings so we should all be thankful for what today has brought us.

Welcome!

Carla

Life Insurance? I'm not too educated in that area. Aren't I too early to get into that? Why would you recommend it for me prior to getting tested?

I completely hear you and agree with you in that we never know what will happen to us in the future anyway. Thank you for your kind words and support. Now that I do know I'm at risk, the thought of getting married and having kids is something that I'm very opposed to doing until I know for sure and am certain I would not burden anyone in the process. So it is good that you found out after, and considering you're near your 40's and still haven't seen symptoms of progressing (since you still don't know whether or not you have it) there is a great chance that you don't have it. Which would be wonderful. I don't know how to not think of getting tested - I am far too eager to know because I feel like, whether or not the professionals would agree with me, it greatly determines the actions I will make in the future. It terrifies me - and therefore, I rather remove all doubt. I just wish the process wasn't so persistently postponed by all those who are in control of me finding out - sometimes I feel I have to fight against everything pushing the process away from me, constantly testing how badly I want to get tested. But because I'm in a devoted relationship that seems to only be moving forward in the most secure manner, I can't help but wish I didn't play with time or feelings. I wish he would know what he is getting himself into before allowing himself to commit to me any further. It would only be fair to the both of us.

bella-

if you do test positive, unfortunately, most insurances (life, disability, long term care etc) wont accept you. which is why the logic is to get them before you find out. if you test negative, you can always cancel.

I know exactly where you're at Bella, I can't even get on with my future without testing. I've been with my boyfriend for 4 years, I wanna get married and maybe have children someday but I can't imagine doing that without knowing if HD is in my future. When you haven't been tested, I think it's much easier for a significant other to just be optimistic because it's 50/50. I need him to know what he's getting into and be okay with that, for my peace of mind.

Unfortunately, if you live in America you'll want to get insurances in place before testing...I've got life, long term care, and health insurance and am preparing to get tested in November. Luckily insurance can be relatively cheap if you're young and in good health, but it's still a pretty big hassle to get through the paperwork...

If you ever need someone to talk to, feel free to message me.