Patient Comments: Huntington Disease - Experience

Please describe your experience with Huntington disease.

Comment from: amit jain, 35-44 Male (Caregiver) Published: November 14

In my family 4 person were infected with this problem and 3 have died and one of them is in bed.

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Comment from: Guest, 45-54 Female (Caregiver) Published: October 08

I'm 16 years old and Huntington's disease (HD) was passed through my granddad to my dad. I grew up with my dad my whole life until I was 13 when my dad was put into a home as my mum felt she couldn't cope. A few months after my dad was sent to hospital with a cough infection but because of the disease he was unable to fight it and passed away 5 days later with his family by his side. My sister who is now 20 has been tested for HD when she was 16 and was clear. Me on the other hand, I felt very alone and the 'disabled one.' I will be receiving my results on Monday and hoping for the best. I love my dad so much and it was so much pain to see him suffer. My dad will forever be in my heart.

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Comment from: Sue, 55-64 Female (Caregiver) Published: February 01

My cousin has Huntington's disease. She is 59 years old. She had three other siblings who died from this terrible disease. She also has a brother in the hospital with it. My concern is she is still driving and her children feel she should not be driving. We tell the doctor this and it seems to just go over their head. We are concerned that she will get in an accident. How do we end this fear of her driving? She is very stubborn and violent. It seems like no one will listen. We even called the police on this. Any advice will help.

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Comment from: JB, 45-54 Male (Patient) Published: September 25

My mom died of HD last year, she was 67. She started showing signs when she was in her late 50's, I think. Her brother had it also and he died too. I am 51 and I think I am getting it. I will not bother with testing. My brother and sister are just in total denial. I hope to have a serious talk with them soon. They both have kids. I don't and won't. I live overseas and have a very interesting and active life. I still have so many plans and am watching this like a hawk. I still need to work. Its pretty scary stuff.

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Comment from: scared34, 25-34 Female (Patient) Published: October 13

My mother passed with HD in 2004. She was only 42. I have two siblings and none of us has been tested yet. We are all afraid of getting tested because seeing all the pain and suffering my mom went through was so hard. I think that my sister may have HD. She has two kids and keeps running out on them because she can't handle them. I don't know what to do. This is one of the worst diseases and I wish there was a cure.

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Comment from: Gloria, 35-44 Female Published: March 16

hello, my name is Gloria and my father has HD, and it is very difficult watching him suffer with this cruel disease, my father is a Great man, loving and giving and so positive, he is a true joy to be around even now, my father is 65 yrs old, and I hate to think of him not being around. He was tested with it about 19 yrs ago. I watched his father suffer as well with HD. My older sister got juvenile HD. Now she is 38 and is bedbound. She has children who sadly see her deteriorate. I have been tested and am not a carrier. I suffer daily with the guilt.

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Comment from: godschild, 13-18 Female (Caregiver) Published: December 12

I am a mother who daughter has Huntington disease. She was five years old. I don't understand why she has to suffer so much. I love her so much. She is so happy all the time. Now she is getting worse by the day. I don't want to put her into a nursing home that's not the place for anyone. Now she is 13 and her birthday is July, 4 1998. She is a special person to all of us. She has 2 brothers that love her dearly.

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Comment from: Jane, 55-64 Male (Caregiver) Published: April 12

My husband was diagnosed with Huntington's Disease at the age of 57 with no known family history. We now realize that his mother has the disease in a much milder form. She is still alive at 86 and does not display obvious symptoms. She has not been tested. We believe that other family members may also have had the milder form but have passed away before symptoms manifested. No other family members have been diagnosed to date. My husband's CAG repeats are 42. In the 7 years since his diagnosis, he has lost almost all of his abilities and is now in full time nursing care. He has a lot of movement which leaves him exhausted. His coordination is poor and he has extreme difficulty walking. He has recently started having rages and is uncontrollable and unreasonable when these occur. He has damaged his room quite extensively and you have to just leave him alone until he settles down. Sometimes the trigger is frustration, other times his own thoughts lead him there. He has adverse side effects to many medications so we have to be vigilant when he tries a new drug. He has swallowing issues with both tablets and food. We are reluctant to get a feeding tube as he would tear it out in one of his rages. This is a most difficult disease to treat and manage as there is no cure and as of now, no really effective treatment for all patients. We have children and grandchildren who are all at risk.

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Patient Comments

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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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