tag:blogger.com,1999:blog-10081281.post2053269847420278886..comments2024-03-10T11:27:23.742-07:00Comments on At Risk for Huntington's Disease: Huntington’s disease, loneliness, and loveGene Veritashttp://www.blogger.com/profile/10911736205741688185noreply@blogger.comBlogger8125tag:blogger.com,1999:blog-10081281.post-17636614934029403322016-12-17T18:20:50.292-08:002016-12-17T18:20:50.292-08:00I agree, asked that my daughter have her husband t...I agree, asked that my daughter have her husband tested before marriage so she could make an informed decision and both refused. A few kids later and I think he is the most selfish person on the planet. I couldn't look at my kids knowing I rolled the dice and destined them to a horrific early ending. Then I remember life is lived in moments, little or big, whether our time here is predestined or not. Some people live more in 30 years than others that have 70 years. Maybe our children being caretakers scares us more than it does our children because they are still children to us. I suppose character is decided by when we stand and fight. It is better in life to love deeply, than not to have found that love. Truth is we made our life choices and lived with the outcome. It is their time to do the same.Anonymoushttps://www.blogger.com/profile/09139685839538338820noreply@blogger.comtag:blogger.com,1999:blog-10081281.post-28961075300251889252016-10-26T18:56:01.340-07:002016-10-26T18:56:01.340-07:00I am the father of a young woman who is dating a ...I am the father of a young woman who is dating a young man who is at risk, but has so far refused to get the predictive test, and is in denial of the reality of what this could mean to my daughter.<br /><br />In love or not, my feeling is that a refusal to get the test, before they might marry, is selfish and unfair and cowardly by the person at risk.<br /><br />Say I am heartless and emotionless, but I think the fact that this person does not realize the importance of his partner knowing, is both immature and the most cowardly act imaginable.<br /><br />How dare he act this way?Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-10081281.post-21565056146222737072013-03-10T19:37:51.530-07:002013-03-10T19:37:51.530-07:00Hi I am a 19 year old female who is at risk and ve...Hi I am a 19 year old female who is at risk and very scared. I will going through the process of genetic testing in the next four to five months... If anyone feels like making a friend or is just scared like I am ill be your friend. My email is mjjmlover@yahoo.com don't be afraid to contact me, I want to meet people who share the same feelings as I doAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-10081281.post-15560097420869042052011-05-17T23:44:12.417-07:002011-05-17T23:44:12.417-07:00I just wanted to say thank you very much for posti...I just wanted to say thank you very much for posting this blog. I am a college student who is at risk for HD and it's not easy. There's a part of me who just wants to know if I have it. Also, my dad is currently trying to live through it, but he's getting to the later stages of it so soon. It's hard knowing that he could die at any time because I had two others in my family die from it too, my grandpa and my aunt, but I have faith and hope that everything is going to be ok. Thanks again and God Bless.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-10081281.post-21534386408576826822011-03-25T09:42:27.291-07:002011-03-25T09:42:27.291-07:00Thank you for this blog.
I remember when me and...Thank you for this blog. <br /><br />I remember when me and my love started dating. About a month in he told me about his family's HD experience - and the possibility that he too may have it. (He is still coping with getting tested.) I quickly took out my pda and googled HD. Watched youtube footage and researched. I told him it didn't matter. It does matter - but not in the way that will keep me away from him.<br />I grew up in a household where - no matter how tough things get - we follow through - because we are family and we love eachother. That's how I was raised. That's the way I know. Sure, it's scary - but life is scary...and I haven't left "life" yet... <br />He is my love - and I won't ever give up on him. Having been in and out of hospitals myself (as a child and adolescent) I know how tough it is to think of oneself as a burden to others. My love's concern is that he will not be able to take care of himself and doesn't want to be a vegetable in a care center...alone. I assured him that I wouldn't leave him alone. It took a long time for him to understand this concept. But he understands it now. And we are both prepared to move forward together - still knowing that there is the possibility of him testing positive. But we will jump that hurdle as we approach it. <br />Good luck to all out there who are in some way or another affected by HD. My heart goes out to you sincerely. God Bless <3Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-10081281.post-53549381054270561902011-03-24T15:45:35.784-07:002011-03-24T15:45:35.784-07:00Thank you for writing this. It really means a lot ...Thank you for writing this. It really means a lot to me, and I'm sure the same goes for a lot of people who can just relate to what was said in it.<br />I actually got a boyfriend not too long ago, and right before it was official, he was telling me about how he'd be happy to be my caregiver if I'd let him, for when the time comes when I can't take care of myself anymore. It must take a strong person to commit to that sort of thing, and what I would think would be true love for a person.Ji Kwonnoreply@blogger.comtag:blogger.com,1999:blog-10081281.post-60972267797504996882011-03-24T15:41:17.309-07:002011-03-24T15:41:17.309-07:00Thank you so much for writing this! I'm so hap...Thank you so much for writing this! I'm so happy you included my message to you as well. You're such an amazing person, and you continue to give so many people so much positive encouragement day in and out. I hope anyone who is HD positive, or know someone who is, or know anything whatsoever about HD never give up the fight to end this disease. With your encouragement, we won't.Jessicanoreply@blogger.comtag:blogger.com,1999:blog-10081281.post-13948564509600858012011-03-23T20:12:52.712-07:002011-03-23T20:12:52.712-07:00Thanks for this blog post. Before marrying the lo...Thanks for this blog post. Before marrying the love of my life since age 15, it never once occurred to me not to be with him because he was at risk for HD. His at-risk brother (who later tested negative) had a serious girlfriend leave because of the same issue. I guess it depends on the person. <br />After my husband tested positive in our second year of marriage, we had to deal with the whole "kids" issue. Fortunately for us, since we had the "dad" jhd concern, our accidental pregnancy gave us an HD gene-free baby. The prenatal testing was stressful, and I did feel I was judged here and there, but all turned out for the best.<br />Life does not end with and HD + result. We all know that life can turn on a dime for everyone. Live it like it's the best life you have. :)Anonymousnoreply@blogger.com