Hi Group,

This is my first time posting. I'm 39 years old, and my Mother died July 10th 2006 from Huntington's Disease. She was 59, with a CAG repeat of 43.

Our family had no idea that Huntington's disease was in the family until last year. Now my sister and I, as well as her two kids are at-risk. Also, after tracking down my uncle through the police department, I found him in a nursing home at age 57.

I was wondering if any of you have traced the disease back to Europe. My research has led me to a small town in the Ticino area of Switzerland. I understand that it was not uncommon for families to live in this remote area for as many as 12 generations. The area is near the Italian border and was often isolated by harsh winters.

I suspect the gene was brought to Northern California by a 16 year old Italian speaking girl traveling to the US alone in 1890. She would have been my GG-grandmother...

Anybody else gene hunting in the family tree?

CAdreamer

CAdreamer,

There are many of us trying to trace HD families through genealogy. It is difficult, as HD was/is often mis- or un- diagnosed, making it hard to determine exactly which family member suffered from HD. Some family members died at an early age from other causes which may have been related to HD. Or not.

Rootsweb has an HD mailing list: [lists.rootsweb.com]

I've been trying to trace the HD gene in my husbands family through geneology too. I've sent for a few death certificates but none of them show HD as cause of death. It's difficult because none of his mothers family is alive and the last of his fathers family died recently. His only living sibling tested CAG 34 barely "dodging the bullet" his sister had died from cancer before he became symptomatic.

Marg



Edited 1 time(s). Last edit at 06/29/2007 10:58PM by marg.

My dad has done a ton of geneology on our family, has found tons of distand relatives with hd, parkinsons, and alzheimers, and the parkinsons and alzheimers are probably misdiagnosed hd. My dad's great grandfather (or maybe great great, i'm not sure) was a physician in Ireland, and came over here during the plague, and he died very young, in his 40's, and they said it was from nervous exhaustion from treating so many patients during the plague. But, turns out he was the carrier of hd, so i say he had hd. Anyways, he had many children, i think maybe 11, and i think about 7 of them got hd, and continued passing it on to their generations. But, the one son who was a direct link to my dad, would have been my dads grandfather, never got hd, but died from a heart attack. Then his son, my dads dad, also died from a heart attack, at age 70, with no apparent hd symptoms. Now here comes my dad, and me. I began to have symptoms 5 years ago, and tested pos for hd 3 years ago, with a CAG of 39. My dad, who is now 75, also has a CAG of 39, and he only began to get symptoms 2 years ago, THREE years AFTER me! The neuro says its cus a CAG of 39 is rather unstable, sometimes it gives very late onset, sometimes much earlier, it's not as predicatable as the higher CAG's. So, my dads father and grandfather also would have prob had a CAG of 39, and had they lived longer, would have had a real late onset. But my dad loves doing his geneology, and has traced many many distant relatives, and many many with hd. So it is quite interesting.
PS I saw hd geneology being discussed either here or on hunt-dis one time, and some people were saying that there were two people that came over from either ireland or england, i'm not sure, and settled on the east coast of the US, and from them, many many of the people in the US that have hd may be related to those two original people. Gee, wee may all really be one big happy family lol lol lol



Edited 2 time(s). Last edit at 06/30/2007 12:00AM by Barb.

Barb, your research really interests me. The Scots Irish English in particular can be so private about family history. I think it is a result of religious persecution or whatever. I just keep thinking that if the number of affected people is so small that yes maybe there are a ton of us who are related by a few generations back and we don't even know it.
When I do research on family history I seem to loose tract of distant cousins after two generations back. And I agree with you that it is often misdiagnosed as Parkinsons or whatever. People were more accepted as being a 'little strange' in former days and it was left at that.

Hi Group,

I was glad to see the interest in Genealogy.

I've added over 3000 people to my family tree on "Ancestry.com' in a little over 2 years.

Because you have access to so many records in one place you can find patterns of early death pretty easily.

It's too bad that the older generations were so secretive about HD.

Since most of the cases of HD originated in Europe, I suspect that a lot of us are related somehow. I'm looking forward to meeting some new relatives

PS: EllenC, thanks for the Rootsweb information. I subscribed to the list...

CAdreamer

According to Dr. James Gusella about 30 percent of the HD gene carriers in this country are related to one another.

I wish I could know about my distant relatives as my great grandma lived in the same state as Woody Guthrie's mom. Just wonder if they were cousins or whatever, so interesting. That side of the family was always especially creative in art and writing, as I am, too. Makes you wonder.

My HD reportedly came from my g-g-gf who immigrated from Germany. Miller or Mueller.

I always feel I am related to anyone who has a last name familiar to our area . The reason being my family history and a handful of other families , all arrived here and or New England states . They criss crossed for years , back and forth from Nova Scotia and the states . Those families spread all over Canada , US of A , and Australia . They had their origins in Ireland and Scotland . But they intermarried with the other immigrants , from , places like Germany . I personally wonder if it is really , just 1 person HD started from rather than defects in numerous people who then have passed HD on . Just my personal opinion . Anyways , JL , we have Miller`s from Germany , right here close to home . I am sure , if I look at my history I could find many of your family names in my families genealogy . So , hello , cus All of my best. db

The problem I found with researching Millers, db - is that there are so freakin' MANY of them!

A couple of thousand in Portland, alone. ZILLIons in the online genaeology databases. To add to the problem, my g-g-gf also had EXTREMELY common first and middle names. Henry William Miller. Heinrich Wilhelm Mueller. Whatever! The problem is not finding a "hit" - it's wading through them all!!!

Even in Portland - very, VERY few Millers are related to me! I did find a few cousins with other last names - even descendants of the Miller family line. But none of them has traced the family back further than old Henry. He could have ACTUALLY been dropped by "the stork", for all I know!

Jl...you think you are descended from stork droppings? Yuck!

Probably better than the real story, Eric!

So I've had some time to look over the Genealogy List on rootsweb and I couldn't help but notice that most of the postings were about English Ancestors.

I've read that researchers are finding at least three different origins of Huntington's in Europe. Is there anybody here that can trace it to Switzerland or northern Italy??

My Mother had HD. She was born in CA to an Italian Mother. Her mother had HD.She was born in CA to an Italian Mother. Her Grandfather had HD.He was born in CA to a Swiss-Italian Mother. I believe that this Swiss-Italian woman was the one who brought HD to CA in 1890. Her name was "bessie" Verzasconi. The name is very rare and refers to "Valle Verzasca", a remote canyon at the base of the Italian Alps. Only a few thousand people live there now, but I believe the town was over 1000 years old.

Although I don't think my Mother's Portuguese relatives carried HD, I was surprised that the Portuguese also carried a neurological disease to CA in the 1800's. They brought Joseph's Disease from the Azore Islands. Again, ancient settlements, isolated, limited gene pool... coincidence?

Also, my Mother's symptoms were a little different. She started with severe mental problems by the age of 35. She did not develop noticeable chorea and ended up with rigidity for the last 6 months. A post mortem DNA test did confirm 43 repeats on the 4th Chromosome. The doctors treated her as psychotic for 20 years before they realized something else was going on.

In my family the affected surnames are Estelita, Ferrari, and Verzasconi (so far...)

I just love detective work...

Ron



Edited 1 time(s). Last edit at 07/02/2007 06:04PM by CAdreamer.

Well, my dads, great great grandfather, or maybe 3 greats, not sure, was from ireland, and he was the hd carrier in our family. He was a physician, named dr sturgeon. He came over during the plague, and i think that was in the 1500's. Ive heard that his family has been traced back further, i think the roots go back further to england and maybe france too. But i dont know of anything further than that.

My research hasn't led me to Switzerland yet. I have found a couple of HD families connected with Switzerland County, Indiana. A search on Wikipedia indicates that it was so named because of the large numbers of Swiss immigrants. [en.wikipedia.org]

My wife, now 61, was diagnosed with HD in 1990. That launched me into genealogy in earnest, and I now have lengthy family trees for both of us. Except, of course, for the HD carrier line, which is very murky. My wife's mother, grandfather, and great-grandmother were easy enough to trace, but there I'm stalled. Her name was Isabelle McNicoll, and was born (she said) in 1877 in New York, although I've never been able to find a birth certificate for her there. Her father was born in Scotland, her mother in New York, according to census records. I cannot say for certain from whom she inherited the HD gene, and since I don't know her mother's maiden name, I'm at a dead end there as well. Isabelle was in San Francisco at a young age, quite possibly an orphan, since her parents were not at her marriage to Joseph Mello in 1895.

It would be wonderful, of course, if something above rang a bell with someone else out there. Hope springs eternal...

JL, we could be related!!!!!! My Dads side {the side w/HD} comes from Germany---I am unsure where the gene started since both Gparents were in NHs early and diagnosed {prob incorrectly} w/other issues--

But any how--Wow Virgo Pals and Possible Kin LOL
DCB

I wouldn't be at all surprised, D!