tag:blogger.com,1999:blog-10081281.post48208972416814574..comments2024-03-10T11:27:23.742-07:00Comments on At Risk for Huntington's Disease: My new profession: HD activistGene Veritashttp://www.blogger.com/profile/10911736205741688185noreply@blogger.comBlogger4125tag:blogger.com,1999:blog-10081281.post-79159104708450406522009-11-11T00:11:39.441-08:002009-11-11T00:11:39.441-08:00Nice blog! it's a simply super... website dev...Nice blog! it's a simply super... <a href="http://www.itsolusenz.com" rel="nofollow"> website development </a>Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-10081281.post-14165900628275630082009-10-24T10:52:28.720-07:002009-10-24T10:52:28.720-07:00Alyson:
I have never regretted getting tested!
T...Alyson:<br /><br />I have never regretted getting tested!<br /><br />There is no rush to test. Discuss it. See a psychologist or counselor. Make sure you get tested at an official HDSA testing center such as a Center of Excellence.<br /><br />Good luck and keep me posted!<br /><br />GeneGene Veritashttps://www.blogger.com/profile/03599828959793084715noreply@blogger.comtag:blogger.com,1999:blog-10081281.post-21556034442021375622009-10-24T05:04:04.879-07:002009-10-24T05:04:04.879-07:00Thank you for this blog. I had never heard of Hun...Thank you for this blog. I had never heard of Huntington's disease until 3 weeks ago when my mother was diagnosed. I was not told about the testing because they really thought she had parkinsons and they did not want to worry me unecessarily. I am overwhelmed by all the websites and the reality of this disease not for myself, but my little boy. I have a question as I debate this choice in my head. Do you ever regret being genetically tested? My husband and I both feel that I should do the test. Living with a 50% chance will make me live with the disease anyways and I feel it will drive me slowly insane, but I have been advised to not do it. My other issue is having more children and getting myself into research studies now, so that if I have this and do not have a chance perhaps I can contribute to my son or other people's children. Again, thank you for writing this blog and being so honest. I am going to use it as a tool to prevent a breakdown in relations with my brother and other family members as we inform them about this disease. You write about your father being your Huntingtons warrior, well with this blog and your honesty, you are my warrior.Alysonnoreply@blogger.comtag:blogger.com,1999:blog-10081281.post-15248717875997031112009-10-14T14:57:45.558-07:002009-10-14T14:57:45.558-07:00I am in my email and I see you have a new blog ent...I am in my email and I see you have a new blog entry. I cannot open it up and start to read like any other email. I go to your blog, I read it's title and then find myself getting up from my PC and taking a minute to prepare for whatever I am about to read. While growing up and during most of my adult life, HD has been a secret. Even among my family members who were already exhibiting symptoms. Who were we fooling. That elephant has never left the room. I read, I shed tears, I smile, I nod in agreement. No one in my family has ever been tested. I have never been tested. Think I have made it Gene. I am consumed with guilt that I think I have survived. I am now an advocate for HD. I am trying so hard not to allow all the pain in the past and pain yet to come, to paralyze me again. I again am overwhelmed by your strength and your courage. Thank you for writing.Anonymousnoreply@blogger.com