Hi all-
If you would be so kind...Please take a moment to share your CAG repeats (even if tested negative) at the repeats (if known) of immediate family members: affected parent, grandparent, siblings, children. I am intrigued by this information and want to do my own little "research" looking at the patters of inheritance in regard to repeat stability among families.

I will be looking at the possible connections between sex of offspring, sex of affected parent, correlations among siblings...and so on. I know this research has been done, but as I said this is more on a personal level of curiosity and interest. Your information will NOT be shared!

I am at risk!

HERE IS MY HISTORY

Assumed grandfather had HD or a high normal repeat that mutated in his offspring

Aunts/uncles/their children are unknown/untested

Mother: CAG 38.....symptomatic since 35 (severe head trauma started symptoms)

Older brother: Untested

Myself: untested (will start testing process soon)

Younger brother: did get my mothers HD gene, but contracted to CAG 32

Thanks in advance for sharing! I really do appreciate it.

-Krista



Edited 2 time(s). Last edit at 06/14/2010 06:57PM by kjunie.

On this request, I would be surprised if you get much. Most of us don't have a thorough history like that. In my family for instance, no one has tested. All so far have been clinically diagnosed. The small number you might get won't tell you much. It will look like people aren't interested, but really it's they don't know. Even of the people here who have tested, their parents probably didn't because testing was expensive and testers were screened to discourage being tested. Once you get to grandparents, there was no test and they may have even been misdiagnosed. All this work has been done. The answers are as good as they get. If you come up with anything different, it's because you group is too small.

Grandfather-unknown
Mom-CAG39
Me-CAG 40
sister1-CAG39
sister2-CAG40
sister3-CAG41

Our family struck the genetic lotto;all siblings have gene.

12 neices/nephews at risk including my 2 children
3 grandchildren at risk

My former husbands CAG is 42, Kim's we don't know.

My cag is 39 and i was diagnosed as symptomatic 6 years ago, in my mid forties.
My dad's cag is also 39, and he is in is 70's, and he became symptomatic a couple of years after i did.

Two siblings, both positive. Mine 40, my brother's is 43. No other family history, but by process of elimination the gene had to have come from my father.

Will

I'm the only sibling whon has tested and I have a CAG of 37. My brother died at the age of 52 and my father died at the age of 72, both were clinically diagnosed before the advent of the genetic test.

My daughter's CAG is 60. She was symptomatic at 21(She's now 27). My wife died the year the gene was discovered so was never tested.

Mine is 43/17. I'm 32 and healthy.

I don't know any other CAG's in my family, but Mom is still undiagnosed at 57 (probably should have been diagnosed by 55), and Grandmother was not diagnosed until her 60's but has now passed.

I have lots of hope that "onset" will be late for me too. If it turns out that Mom's CAG is around 43, knowing she was fairly healthy into her 50's, that'll reinforce my hope for myself. But I think my hope for late onset would take a hit if it turns out that my Mom has a CAG that's much lower.

In my husband's family:
Hubby: 44
Mother: 44
9 grandkids (including our children) are at risk.
1 Aunt with HD (CAG?)
1 Cousin tested positive (CAG?)
Husband's siblings: 1 at risk, the other deceased
Grandfather: never diagnosed but clearly exhibited HD.
Numerous extended family for generations with HD but didn't discover it until my Mother-in-law and her dister were diagnosed 8 years ago.

My Dad's CAG 43.
don't know his mom's
His two sisters are positive and 1 brother. (don't know their's either)
2 sisters are at-risk, but they are 60 and 52 with no symptoms. 2 other siblings died of other causes, before onset would have probably occured.
my sister and I are at-risk and so are 7 other cousins.
I'm almost 35 with no symptoms, although I can certaintly "hunt" and immediately find some, but overall, I would have to say not yet. Dad is 54 and probably has been having symptoms for about 7 years.

My Father-in-Law had CAG 40 (symptomatic in mid 50's - died at 72)
My husband was clinically diagnosed - don't know CAG (symptomatic in mid 40's)

he has 3 sisters at risk - none symptomatic
we have 2 children at risk
they have 6 cousins at risk

Father-in-law had 1 brother who died in late 60's with no symptoms of HD

Mine is 47.One sister was dxed in her 30s dying at 42 by suicide. The other sisters was 28.
CAG testing done at Credit Valley hospital in 2002 told people CAGs under 40 that they did not have HD and did not have to worry about it and closed the files with no referrals to neuros. Credit Valley headed the genetic team in Ontario. This has many implications for all the people tested. I think the people with low CAG's have a pretty good shot a getting a cure sooner than people with high CAGS. They also have a potential to use lifestyle, little alcohol, lots of hobbies, interests to have a normal life for a long time. I also hope that someone who made a lot of money from this mistake will go back and reinterpret the results.

My grandma died from HD when I was 3. Not sure of the CAG.
Father diagnosed in 1994 with CAG 42. He is now in the late stages.
Aunt died before being tested but was suspected of having it.
Uncle diagnosed in 1990. not sure of CAG but he passed in just a few years
Uncle that refuses testing be we think he has it. Lives in a VA home.
Aunt not tested and also no symptoms.
I was tested this year at age 30 and I have a CAG of 45 and I am symptomatic.
I have one sister at risk, but not tested and no signs.

No one in my husband's family knew their CAG's as far as I know.

My husband is at-risk, not tested
Brother-in-law = symptomatic late teens
Father-in-law = symptomatic in late twenties
husband's aunt = symptomatic in mid twenties

My husband's grandfather also had HD, he took off when my father-in-law was very young and had 4 other daughters from another marriage (I don't know their status). My husband also has one uncle who did not inherit the disease. I believe his grandfather had two siblings, a sister and brother, and I also believe that they both inherited the disease.

My mom's CAG is 49 - she is in the later stages of the disease and 60 years old and probably started showing symptoms in her late 20's. We just thought that my mom was little off and maybe depressed, had no idea it was HD.

My grandmother had HD and started showing symptoms in her 30's and died in a nursing home at age 72. We thought that she had Alzheimer's.

Her mother apparently had HD as well and left the family sometime in the early 1930's. No one knows what happened to her, but she must have started showing mental symptoms in her late 20's as well. She was very volatile and violent like my grandmother and people thought she had some kind of mental issue.

Both my mother and my grandmother were only children. Both my grandmother and great-grandmother were in their 30's when they were pregnant. My mom had us in her early 20's.

My mom had me and my brother.
My brother has not tested.
I tested this fall and was negative with CAG count 18/20.

I'm not sure how much help this will be and I wish that I knew more, particularly what my grandmother's CAG count was as I feel it was higher than my mom's.

My dad was tested (posthumously), and his CAG was 42. He died at 65, after being symptomatic for5-10 years.

My CAG is 42, and I don't have any symptoms at the age of 56. I don't think either of my brothers have tested, but I'm the oldest.

tellie