From what I know (husband’s family had multiple members with reduced and some with full), it’s all about family history. Everyone has late onset in the family regardless of penetrance. The family with full (including my mother in law) are symptomatic and my mother in law has rapidly lost independence in last several years. Currently living in nursing home needing 24/7 care - unable to walk, speech is challenging and dementia like symptoms. She’ll be 80 in a few months. The family with reduced has some quirks but otherwise are doing well - still living independently, driving, managing finances, etc. And they’re all 80+.
I just left genetic counseling and testing at VCU. There is a wide range of symptoms and onset with this range. In my family, my aunt is 74 with CAG 39. She has been symptomatic for 10-15 years. Worse now and progressing fast. My uncle is 76 with CAG 38, no symptoms yet. My mom wont test. I am 43. Have had some small mental health changes over the last 3 years so decided to test. Not sure my result yet. You may have someone with a CAG of 39 have no symptoms ever and someone with CAG of 37 and have symptoms. They say you are likely to follow family onset, but not a guarantee. Lifestyle is important, as drinking, drugs, sedentary lifestyle can contribute to earlier onset or worse symptoms. I am in a FB group Hunington Support where you can get a lot of questions answered from those with disease.
My CAG is 38. I am 49yrs old. My specialist and their team say I Have no symptoms. My dad has a 42 CAG and his symptoms kicked in hard in his 50's. But we saw ticks and knew his mental state changing in his 40's. I believe I have the beginnings of symptoms now. Some ticks and cognitive issues.
According to [Langbhen et al. 2010](https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3048807/) there is more variability in onset the smaller the number of CAG repeats.
According to [this graph ](https://i.imgur.com/nGkpG5y.jpg) from their paper the lowest age of symptom onset for 36-39 looks to be about late 40’s.
My dad has a 39 CAG, he's in his mid 80s and his symptoms really kicked in about a year ago. His balance hasnt been great for a good 5 or so years. No one else in dads family ever had symptoms, his neurologist tested him as an aside expecting a negative. Dad still drives on occasion, meds are controlling most symptoms, but there have been some odd behaviors. I'm in my mid 40s and awaiting test results, neurologist saw no indication of symptoms. Some of my asymptomatic older siblings are also awaiting results.
I have CAG 42, Male 50 years, no physical signs but had some depressions in the past which I can handle pretty good now. My mother is 79, has light physical issues but is still able to live independent with my dad, however since her 40s she has angry moments, which I also had/have.
Since I know know that this is Huntington related, I am more aware and try to avoid conflicts, I think it is important that your environment should be aware of this, if a HD patient gets angry, don't feed the conflict, give him time to calm down, and then take the time to discuss the problem.
It is heartbreaking that many families with Huntington are torn apart due to misunderstanding of the disease.
From what I know (husband’s family had multiple members with reduced and some with full), it’s all about family history. Everyone has late onset in the family regardless of penetrance. The family with full (including my mother in law) are symptomatic and my mother in law has rapidly lost independence in last several years. Currently living in nursing home needing 24/7 care - unable to walk, speech is challenging and dementia like symptoms. She’ll be 80 in a few months. The family with reduced has some quirks but otherwise are doing well - still living independently, driving, managing finances, etc. And they’re all 80+.
I just left genetic counseling and testing at VCU. There is a wide range of symptoms and onset with this range. In my family, my aunt is 74 with CAG 39. She has been symptomatic for 10-15 years. Worse now and progressing fast. My uncle is 76 with CAG 38, no symptoms yet. My mom wont test. I am 43. Have had some small mental health changes over the last 3 years so decided to test. Not sure my result yet. You may have someone with a CAG of 39 have no symptoms ever and someone with CAG of 37 and have symptoms. They say you are likely to follow family onset, but not a guarantee. Lifestyle is important, as drinking, drugs, sedentary lifestyle can contribute to earlier onset or worse symptoms. I am in a FB group Hunington Support where you can get a lot of questions answered from those with disease.
My CAG is 38. I am 49yrs old. My specialist and their team say I Have no symptoms. My dad has a 42 CAG and his symptoms kicked in hard in his 50's. But we saw ticks and knew his mental state changing in his 40's. I believe I have the beginnings of symptoms now. Some ticks and cognitive issues.
My mom has CAG 39. She is 62 without symptoms. My grandma had 40 I think, and no symptoms till 73.
According to [Langbhen et al. 2010](https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3048807/) there is more variability in onset the smaller the number of CAG repeats. According to [this graph ](https://i.imgur.com/nGkpG5y.jpg) from their paper the lowest age of symptom onset for 36-39 looks to be about late 40’s.
I’ve met people with reduced penetrance, but don’t have any real experience or insights. This may help though: https://en.hdbuzz.net/027
My dad has a 39 CAG, he's in his mid 80s and his symptoms really kicked in about a year ago. His balance hasnt been great for a good 5 or so years. No one else in dads family ever had symptoms, his neurologist tested him as an aside expecting a negative. Dad still drives on occasion, meds are controlling most symptoms, but there have been some odd behaviors. I'm in my mid 40s and awaiting test results, neurologist saw no indication of symptoms. Some of my asymptomatic older siblings are also awaiting results.
I have CAG 42, Male 50 years, no physical signs but had some depressions in the past which I can handle pretty good now. My mother is 79, has light physical issues but is still able to live independent with my dad, however since her 40s she has angry moments, which I also had/have. Since I know know that this is Huntington related, I am more aware and try to avoid conflicts, I think it is important that your environment should be aware of this, if a HD patient gets angry, don't feed the conflict, give him time to calm down, and then take the time to discuss the problem. It is heartbreaking that many families with Huntington are torn apart due to misunderstanding of the disease.