Patient Comments: Huntington Disease - Experience

Please describe your experience with Huntington disease.

Comment from: sboos, 25-34 Female (Caregiver) Published: August 02

My father died of HD 7 years ago, he was 52. I now visit my HD suffering sister, who is 37 and lives in a nursing home. She has a 9 year old little girl, and an amazingly wonderful husband. My mom stayed by my dad's side throughout the whole disease too, even though she had every reason to leave. The only way to get through this horrible disease is to stick together and lean on each other for support. It is emotionally draining, and I would not wish this is on my worst enemy. The whole family suffers together.

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Comment from: Sandy, 55-64 Female (Caregiver) Published: January 28

I have a friend who has Huntington disease. She has been declining over the last 10 years. Her family and I tried to get in home help for her a few years ago. That did not work. She is now in a nursing home. It was a difficult thing for her family to do. I see families struggling with placing relatives in nursing homes. They feel guilty about it. Nursing homes are better equipped to help Huntington patients. Do not feel guilty. You are helping your loved one. Just find the best facility you can and monitor their care. Stay in touch with them.

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Comment from: 13-18 Female (Caregiver) Published: July 31

I am 49, I have been around HD for 35 yrs starting with my brother in law, I watched it kill him, two of his children are dying, and I am raising three of his grandchildren, we adopted, Brianna was only 8 yrs old, she was tested for HD, and did not inherit the gene, but did have CP, and a seizure disorder. She passed away. Her now 14 year old sister does have HD. She is a handful, extremely violent, destructive, my wife and I feel we will have to institutionalize her very soon. The whole household is at risk from her violence, and we need to protect ourselves.

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Comment from: Alive, 35-44 Male (Patient) Published: July 31

I am 44 my father had Huntington's disease and passed away 10 years ago. I finally had a test done and was diagnosed with the same I guess I am scared to know after seeing him suffer. I am happy to find out before I went through all of his problems and suffering. He suffered before there was a test.

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Comment from: spinderella, 35-44 Male (Caregiver) Published: June 05

My son is 36 years old, for the past month or two he has been very angry, hostile and down right evil, he says hurtful things to his family and breaks things around the house. He said he is depressed. I don't know if he is on drugs (he says he isn't), but something is definitely wrong.

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Comment from: kadiwompus, 45-54 Male Published: May 13

I am a 50 year old man. I have an aunt on my mother's side who died of HD 3 years ago. My mother is 72 years old and has never been tested for HD. Doctors told her that since she doesn't show signs of this disease that she will never get it. My mother also has a brother that has been coping with HD for 4 years now. On top of all this, 3 of my cousins and another aunt have recently discovered that they have this disease. I would like to know if my mother can carry HD without getting it herself.

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Comment from: vestallaugh, 45-54 Female (Patient) Published: April 06

My mother died at 62 with Huntington's Korea. She had had it since she was 45 or so. His mother also had it but lived until 70. I am 53 and so far have no sign of it. It is possibly one of the saddest ways to die and it's something that lives with me always. She choked on her food, because she was aspirating food with every meal. She was in the hospital at the time after one of her many falls.

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Comment from: tosassyas, 35-44 Female Published: March 25

My aunt was diagnosed with Huntington disease. She just passed away from this; she was only 42. As a family, it is really hard to deal with this disease.

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Patient Comments

Viewers share their comments

Huntington's Disease - Age Which Appear Question: Have you or a friend been affected by Huntington's? Please share your experience.
Huntington's Disease - Symptoms Question: What were the symptoms associated with Huntington's disease in you or someone you know?
Huntington's Disease - Testing and Diagnosis Question: Have you ever been tested for or diagnosed with Huntington's? Please share your experience.
Huntington's Disease - Family History Question: Do any relatives have Huntington's disease? Have you or other relatives had presymptomatic testing?
Huntington's Disease - Treatment Question: What kinds of treatment, including medications, have you or someone you know received for Huntington's?

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