Patient Comments: Huntington's Disease - Family History


Do any relatives have Huntington's disease? Have you or other relatives had presymptomatic testing? Submit Your Comment

Comment from: Texas concerned, 45-54 Male (Patient) Published: November 08

My grandmother had Huntington's disease and passed away from it. My mother's brother showed signs, it progressed, and he passed away from it a few years ago. My mother has not yet shown severe signs that could be Huntington's disease (the tremors) but she has had chronic muscle and focus issue but is not having the tremors and she is in her 70s. I am not sure if I am at risk. I have had severe joint issues, back pain, and numbness in my extremities. It has been progressing faster in my mid-40s. I have numbness, tight muscles all over, and spasms.

Comment from: TES, 35-44 Female (Caregiver) Published: October 03

We knew that my great aunt had Huntington's disease (HD) and so did her brother. When we learned that it is hereditary, we researched and found that my great grandmother died of HD. Now, through research, we have found my great-great-grandmother, 6 out of her 7 children, my great aunt and 2 of her brothers, my great aunt had 5 children and 4 of them, all had HD. Out of those, one daughter has HD. There are more that we are finding out with further research. What a tragic family secret.

Comment from: dean, 35-44 Male (Patient) Published: January 23

My grandmother died, my mother has had Huntington’s the past 15 years. I can’t bear to look at her because I know what she is going through. I hate this disease it’s a curse, I haven’t got tested but now I’m left wondering.

Comment from: lyndy loo, 25-34 Male (Caregiver) Published: April 02

My son is 26, perfect, clever, but always been clingy with girlfriends. It has got out of hand last 3 years, he harasses them and can’t leave them alone. He has also done it to us, mum and dad, hit me, called me horrid names, and bullied us. I had the Huntington's disease test about 5 years ago and was clear of the gene, so why do I think my son has got it! I can’t live like this anymore.

Comment from: Therese, 35-44 Female (Caregiver) Published: March 16

Thirty six years ago my husband and his 3 sisters discovered the secret in their family; their mother had Huntington's disease and was locked away in an institution.

Comment from: no name, 35-44 Female (Caregiver) Published: November 18

My aunt has this and it makes it hard for our whole family to live with it. She randomly twitches and spills stuff everywhere. A lot of people make fun of her because they don’t know how hard it is to live with it.

Comment from: hollahead, 25-34 Male (Caregiver) Published: September 25

My son takes Exzine for his condition.

Comment from: Guest, 45-54 Female (Caregiver) Published: September 10

I'm 16. My dad passed away when I was 13 due to HD, which he had inherited from his father. My dad was an only child and both his parents passed away before I was born. Because of that, HD was only a threat to my sister and me. My sister has been tested, but does not have it. I am alone.

Comment from: Tina F, 35-44 Female (Caregiver) Published: August 30

The disease is inherited in our family for years.I watched my Grandmother die from this dreaded disease, and her twin brother and relatives previously before her. I have an Aunt, and her Brother (my uncle) diagnosed with HD. My Aunt has a lot of symptoms and effecting her worse, as my Uncle doesn't show many signs yet. Age difference is only a few years apart. I am less than 10 years younger than them and I am considering to be tested although My Mother hasn't chosen to, and shows my signs or symptoms of the disease.


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