Patient Comments: Huntington's Disease - Age Which Appear

Have you or a friend been affected by Huntington's? Please share your experience.

Comment from: Gracie, 35-44 Female (Caregiver) Published: December 27

My cousin was diagnosed with HD (Huntington's disease) nine years ago. There is no history of this disease in our side nor her father's side of the family. She is married with two teenage sons. It was suggested that her boys do not have children unless they adopt. Watching her struggle with this is heart wrenching. Her motor skills are so out of control it's risky standing or sitting near her. It's so hard to believe that there is not more that can be done for these patients. Her doctor seems to be oblivious to any medications or treatments to help her. Two of her six siblings went through the test to see if they carry the gene. Neither were notified that they were carriers. Having no answers, not even close to a cure and no support for this awful disease is so unbelievable in these days.

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Comment from: unknown, 45-54 Female (Caregiver) Published: December 02

My husband's mother side of the family has dealt with HD for a very long time. His grandmother had it. His mother died of it 30 years ago. His older sister has full blown symptoms for the last 15 years, his second oldest sister died 10 years ago. Now he is getting tested, he is very afraid since he is already showing mild symptoms. We are hoping for a negative result. He is 50 years old and still fully functional.

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Comment from: MamaDeb, 55-64 Female (Caregiver) Published: February 26

I have an adopted son whose biological mother has Huntington's disease as did her father. My son wants to be tested. We were told that he would not get life insurance or medical insurance or may not be able to go into the work he wants to, which is law enforcement. I would hate for him to lose what he wants to do if he gets diagnosed with this disease.

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Comment from: wondering, 35-44 Female (Caregiver) Published: July 12

My mother was diagnosed with HD 7 years ago. She is steadily declining with her functioning. She is choking more frequently now and requires help with activities of daily living. I have been tested and will develop HD at some point. I have a 7 year old son. Wondering if I should have him tested.

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Comment from: Tina F, 35-44 Female (Caregiver) Published: September 05

The disease is in my family and has been for many years. It's so heartbreaking to see our family go through this.

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Patient Comments

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Huntington Disease - Experience Question: Please describe your experience with Huntington disease.
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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