Huntington's Disease Support Group

Huntington's disease (HD), formerly known as Huntington's chorea, is a rare inherited genetic disorder characterized by abnormal body movements called chorea, and a reduction of various mental abilities. The symptoms of Huntington's disease occur gradually over time - there is no sudden loss of abilities and it is hard to determine when symptoms initially occur.

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  • deleted_user

    HD Impact on Marriage

    My wife was diagnosed with HD a few years ago. Her mother has full on HD symptoms and gets worse year after year. My three girls are now at risk. We did not know what HD was before having kids.My question is on my marriage. My wife is so cold, essentially shows complete anger toward me and now is asking to separate after 20 years of marriage. I am devastated and trying to understand if the...
  • Kelhin

    Frustrations of HD

    I have been married to my husband for 30 yrs. We have 2 beautiful grown daughters, their dad means the world to them. About 5 yrs ago, my husband was struggling to concentrate at work. He was an actuary and you really need to use your brain. I noticed irritability,  flaring tempers, loss of balance, lip smacking constantly. 3 yrs ago he started going to strip clubs and having affairs with...
  • nzwife

    head spinning

    My husband was diagnosed about 7 weeks ago even though i can look back 12 years and see the changes in him back then.  We have been together 26 years and he is not the man i once knew.  I have seen most already in what others have written here in him.  I feel angry and feel i and our daughter has been robbed of the life we thought we would have with him. Our son died after a hospital did not...
  • SAD2C

    Sleepless nights

          My girlfriend of 4 years whom I love very much was diagnosed with HD and she informed me of this early in our relationship but to be honest , I didnt quite understand the magnitude.  Her father passed away last year with this horrible disease. The confusing part to me is that his symtoms were much different than hers. He had slurred speech and became very clumsy but didnt show signs of...
  • zigsters

    I have hd, now im pregnant. advice please!

    I am 22 and was diagnosed in May 2015. I just found out I am pregnant. I am getting a pre natal test done to see of my child carries the disease as well. After the test, we are still torn between adoption or being parents. Since I don't know when my symptoms will come I don't know if I can care for my baby. Would you take your chances?
  • Elslok

    Genetic test results

    Hi there,HD runs in my husband's family, his grandmother has it, we don't know if his mother has it and he decided to go for the genetic test. He gets his results in two weeks and I am going along with him to support him. I guess I'm just wanting advice on how best to support him? He says he isn't bothered by the outcome, that he only wants to know so he can plan...but I can't help but feel that...
  • deleted_user


    Does this really work? I don't see much conversation on here.
  • speechstudent

    Student looking for input

    Hello all! I am currently a Speech-Language pathology student looking for some insight into HD. As the caregiver, what has been the most challenging aspect of HD for you? How would you say your daily life has been most affected? Has the diagnosis shifted family dynamics in any way? How has the reaction from friends and extended family been?
  • akurek121

    HD Help!!!!

    Hi everyone,My name is Alison and I am looking for ways to help one of our employees out. He has HD and we are trying to assist him in getting SSI Disability along with some other things. Is there anything specific that you all can point me towards in order for him to get the most possible?
  • I am 44 and recently my father was diagnosed with HD and I am scared and trying to be the rock for my family, the background is my grandfather, uncle and 1 aunt passed away from HD and 2 more aunts currently have the disease and are battling for their lives, now my father.I really feel overwhelmed and depressed and I am trying to get my mother to except the fact that my father has HD she is in...
  • lisadrum

    Early symptoms of HD??

    I am 29 years old and at risk for Huntington's disease. I have not been tested yet, although I do plan on getting tested over the summer. I am a full time college student so thats why I am waiting until the summer to get tested because I just don't think I can handle the emotional stress that will come along with being tested and the 3 hour one way trip I would have to make to the HD clinic while...
  • princtongirl

    Anything to help with the twich?

    Hi , i have been married to my husband who has hd. we been married for a year . Not til now it has cause problems in our marriage. but was wondering if there is anything out there to help calm the twich down or anyone who has used somthing. The Doctors at u.c davis told us about a botox shot but will cost some money and with not having insurance to cover is a huge deal. So i wanted to know little...
  • Bobby5000

    Research on CAG Repeat

    Huntington involves a genetic defect which causes CAG repeat which in turn causes damage. There seems to be surprisingly little research on the cause of CAG repeat though I saw low repeat is sometimes caused by androgen issues. Is anyway aware of cell or animal studies attempting to prevent or regular CAG repeat.
  • meesa8

    In my 50s and found out HD is in my family

    That is the short of it. There is a long story I won't go into, I am on disability and HD could explain symptoms I have had for some time now.I contacted my doctor, only saying I found I needed to be tested and have had no response at all. I checked to see if she got the message, and she did. I can't explain her lack of response.I had recently met with her about a need to communicate better...
  • 1confused1

    Seeking advice

    I am new to this site and new to learning about HD. I have been dating a young man (31) for over a year and he is at risk for the disease. His mother has HD and is in the mid-stages of the disease. She has a nurse at all times, and my boyfriend is with her several times a week, but she has no other family that takes care of her (he has no sibilngs). He is very quiet about everything he is...