I'm 16 years old and have recently found out that my grandad has huntingtons. Unfortunately I found out by overhearing a conversation and my Dad doesn't know that I know about it.

I know that my Aunty was tested and she has Huntingtons but my Dad won't be tested as he doesn't want to know. Obviously I can't be tested because of my age but I am desperate to know if my Dad has it and if my sister and I are at risk. It's so hard going through this on my own but I don't feel like I can talk to my Dad about this. What shall I do?

Thank you for any advice, Lisa xx



Edited 1 time(s). Last edit at 10/03/2011 10:12AM by bettyb00p.

Could you talk to your Mom?

My family found out about HD being in my former husband's family when our kids were just a bit younger than you. We decided to not tell them at first as we needed to get our own emotions in check first. Maybe that's that's what they are doing? My kids Dad very quickly decided to test so our kids would know if they were at risk but not everyone would decide to do that, it's very individual. Soon after he tested positive he went on disability and we told our boys only to find out they had learned about HD in school and I THINK my oldest had overheard us talking also.

I think it's a good idea to talk to your Mom and let her know you overheard their conversation, but understand she will be VERY emotional about it cus I can guarentee you this, she is thinking about YOUR status a LOT more than you probably think she is right now. It's time for your family to be open and honest about this and you should not carry this burden alone! Keep in touch with us PLEASE, Pat

Hi;
I am so sorry that you find yourself here. Welcome, you will get many, many that will give you advice, but in the end you will need to make the decision for yourself. What is your relationship with your dad? You do not mention your mom, Can you go to her? Alot will depend on your relationships with your parents. You cann't keep this to yourself, it can eat you up. I was married to a man that I found out was at risk back in the late 70's. i had two kides at the time, & I was always very up front & honest with them about HD. Now I was the daugther in law, wife, but I need to tell my kids what was what. My In-laws were very much for keeping everything in the closet. My X has HD, & so does my 32 yearold son.

Unfortunately my mom passed away when I was young so I don't have her to talk to about this. But thank you for your help, its nice to know that I'm really not alone and hopefully I will be brave enough to mention it soon. Thank you! xx

How about your Grandmother? I'm very close to my grandson and he can talk to me about anything. A grandmother or aunt or close adult friend can help you start the conversation. Good luck to you, just please don't keep this to yourself for long. I care, Pat

Hey Betty

Sorry to hear what your family is going through, and that you do not have your mom to talk to. I hope you have a special relationship with your Dad and can approach him about what you know. You can keep it as simple as "I overheard you talking about Huntington's and I'm worried about what that means for us." This can hopefully open up communication. He is probably going through a lot of shock and denal himself, so please understand if he cannot talk about it right now. Can your Auntie talk to you as well?

Best of luck. Please come back and visit us whenever you need to.
Patty

Hi Betty,

I'm so sorry to hear that you've recently discovered you're a possible carrier of the HD gene. It's hard to imagine the anxiety this must be causing you, and feeling like you're alone in this must be especially hard.

You are in the same risk-category that my son is; my husband has a 50/50 risk. (My son is only 6 weeks old, though; we learned about his--and my husband's--at-risk status just after he was born. What an unpleasant surprise!)

We are now grappling with whether or not my husband wants to test. If, when he is older, our son were to request it, I'm sure my husband would do it for him. At this time, though, our little one is too young (much too young!) to know what HD is or have an opinion as to whether he wants to know is father's status.

Since this is all so new to you, I'm wondering whether you're *really* certain you want to know your father's status. I'm sure it would be an enormous relief to learn he's negative--and gosh, I sure hope he is! But, what about learning he's positive? Will it be even harder to know that your risk is 50/50 (versus 25%)? I guess, as a mom, that's something I worry about with my son: we'd love to learn that my husband's negative and, thus, our son is safe. But, at this point, I'm not sure I can handle learning that, not only is my husband gene-positive for HD, but, also, my precious new baby is 50% at risk. I guess what I'm saying is, you can't "unring" that bell, and, being as young as you are, maybe going through life for a bit longer knowing that your risk is 25% would be preferable to learning that it's 50% (especially since, if you REALLY need to know definitely, you can't test yourself until you're 18).

You are in my thoughts and prayers during this difficult time following your discovery.

Oh, and I have to say that I believe your dad is probably very, very concerned about your status . . . much, much more than he is about his own. I know I would do ANYTHING to take that risk away from our son, and would gladly take HD myself if I could protect him from it (can't, though . . . doesn't work like that).

Sincerely,

Bluegrass

Sometimes you've just got to be patient and wait until your old enough to get tested on your own. I'm 50/50 at-risk right now and dying to know for sure, but I've got to wait for all of the insurance to get set up before I can even think of testing. I'm only 22, and I think the younger you are, the more you feel like you need to know. A lot of people don't find out they're at-risk until they've already settled into their lives, with a spouse and children and a career. We've got our whole lives ahead of us and want to be prepared.

If you are able to talk to your dad about it, I think it will help a lot. There is nothing quite like the support of family. If not, maybe a best friend is a good option. While they won't have all the information about the disease, they'll still be able to stay by your side and give you encouragement when you're feeling worried and anxious.

You are also welcome to send me a message anytime