Huntington's Disease Community
HD Runs Strong In My Family
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Huntington's disease is a progressive brain disorder that causes uncontrolled movements, emotional problems, and loss of thinking ability (cognition). The purpose of the community is to share support and information with Huntington's Disease patients and their loved ones. Topics in the community include: causes, clinical trials, complications, family issues, living with Huntington's disease, prognosis, research, surgery, treatments

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HD Runs Strong In My Family

So Huntington's runs strong in my family. My mother's Dad had it, as did all three of his kids, my Mom, Aunt, and Uncle. My Uncle moved away and not much was known about him but he died a little while before my mother. My mother died a few years back from it after being in a hospital pretty much my whole life, I'm 19 now. Then my Aunt died about 6 months later. My mother had 3 kids, my brother, sister, and I. My aunt had 2 girls. Both my aunt's daughter's were tested for the disease, and the eldest had it while the younger one escaped. My siblings and I however have yet to be tested. I don't think any of us are really ready to face something that big in life quite yet. My sister had a daughter, she is currently 7 months old. She thought about being tested before she had the baby and thought about getting the baby tested but we never decided to go about with it. Neither of us really have the symptoms associated with HD. However our brother shows numerous signs and he's only 21. I personally feel optomistic about maybe having it. Like I should live my life to the fullest anyway and when my time comes it comes. But I'm still scared to get tested and know for sure. It ***** having this huge dark cloud hanging over you and not even knowning if you have it or not. It's hard sometimes to look at families or old people and thinking I may never get the chance to experience that. I have a lot of family support either way cuz like I said, it runs strong in our family. I guess if you have advice or have an opinion if I should get tested or not it'd help. I fel a lot better after writing this. It ***** sometimes holding it all in.
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Hi Kayla70711, I think I saw a comment of yours in another discussion. I'm sorry to hear about how prominent HD is in your family but I absolutely relate to it. You bring a lot of great questions to be explored and great thoughts. Firstly, I want to refer a great website if you haven't seen it already. http://www.hdsa.org/nationalyouthalliance/nya-1/index.html  This website is designed for youth who live in HD families and who are at risk or are just interested in learning about HD. I think you will find good information in that website. As for everything else, it sounds like you have an open and good support system within your family and I know it's a difficult decision to make about being tested. But the good thing about making this decision is that you do not have to make it over night. In fact, it's best to take your time and really really think about how it will affect you and your family. I always recommend talking with a counselor about how HD has affected you as a person because sometimes you learn soo much about yourself through counseling that you realize you have more control over your life than you think. And you learn that HD is just a part of your life but it doesn't become your life. And you don't even have to speak with a counselor/therapist who knows anything about HD...the right counselor will know exactly how to work with you. Some personal experience on my end, I've been with the same therapist for a while now and she started not knowing much about HD but because she's a good therapist, she has been able to help me process the affects HD has had in my life. And as you said in your last statement, you feel a lot better after writing this. For some reason shame, guilt and secrecy is associated with HD and that has to stop. This is why there are forums like this and websites like hdsa.org for people to come together and bring awareness. I can talk for hours about this but I dont want to bore you. Instead, I recommend you check out that website and feel free to contact me if you any questions or just want some support. I am totally available to help answer questions as you post them so you dont get overwhelmed. Good luck and I hope this helped a little.
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Avatar_f_tn
Thank you so much! I will take a look at that website now. The hardest part for me was being scared I'd never find a guy who would accept me and the fact that I might have this disease. But luckily I found an amazing guy who has helped me in my times of need. It's nice to be able to talk to someone who understands and knows where I'm coming from about all this. And the secrecy thing is huge. We normaly don't tell anyone unless their gunna be a big part of our lives.
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I'm happy to hear that you have someone who is able to embrace you no matter what. I like to look at HD as a part of our lives but not something that takes over our lives. Also, there is soo much research out there and hope for the future that it's important people talk about it and get involved. Within a few years, there will be treatments that actually stop the progression of the disease. As a community, we need to break that secrecy and not feel shame because that is the only way we'll get closer to a cure. Feel free to email me if you ever have any other questions. There are lots of events in the country through the HDSA website that you may find interesting. Good luck and talk to you soon!
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