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  Community Discussions  At Risk  What about not ...
 What about not getting tested?
 
Emaka
3 posts
Joined
1/3/2007
What about not getting tested?
Posted: 03 Jan 07 8:48 AM

This is my first post and even more than that, my first attempt to reach out to other "at-risk" people (and for that matter, the first time I have said that I am "at-risk"...)

My father is 71 (seems old in the HD world), he was diagnoised about 10 years ago when I was 16. He lives in a long term care facility specifically for HD patients and to be honest I had never met anyone else with HD until I went to see him. There was something nice about seeing other people and their families who also had been touched by HD.

I feel like recently I have been consumed by whether or not I have it and what that means. I never considered getting tested. My mom has always said to me- who knows what your "time bomb" will be? And she is right, HD might not be the thing that gets me in the end, so is being tested really the best thing for me, especially since there isn't a cure. But these days I think about every twitch or movement my body makes and every movement it doesn't make - does that mean I am okay? Do I have it? I am anxious and stressed, I feel like I am giving it to myself from all my worrying.

I have read things written by other "at-risk" people, who consider not marrying or not having children and what is the most painful is that, those are the two things that I have been looking forward to the most in my adult life. I don't want HD to take them away from me. I know that to be tested is a personal choice, and a horribly challenging decision to make at that! I guess what I am looking for is to hear if there are other people like me who aren't going to be tested because even with all the moments of uncertainty and anxiety about a movement or a forgotten word, there is something better about living your life without knowing...

Best,

Emi

annmarieoco
7 posts
Joined
8/1/2006
Re: What about not getting tested?
Posted: 03 Jan 07 5:39 PM
I dont think that you have to get tested. I am 23 and I get very anxious too at times. But, I just remember that I love my life and I want to make the best of it while I still can. This is a very sad thing to deal with, but it can also open up our eyes to see that we need to live our lives NOW. I am getting married this December and there is no way in hell that I am letting HD stop me from having babies! There are ways to have kids that will allow them to NEVER get the gene and the best part about that is you dont even have to know if you have it or not in the process. The doctor will just implant the sperm in the non-infected egg and not say a word either way. If you want to talk further-- my e-mail address is annmarie_oco@yahoo.com. Feel free to e-mail when you are feeling sad or anxious. Good Luck and Be Happy--- Annmarie
Emaka
3 posts
Joined
1/3/2007
Re: What about not getting tested?
Posted: 04 Jan 07 9:08 AM

Annmarie,

Thanks for writing! I had no idea there was a way to get pregnant but not pass the gene (and not know about if you have it in the process- I am definitely going to look into this). Thanks also for your kind words, you are right, it is important to live for the NOW and focus on that.

Congrats on your upcoming wedding, have fun!

I will hold on to your email address and definitely get in touch during those tough days...likewise, feel free to email me emi.fujiwara@gmail.com

Take care

Emi

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