When a friend is considering suicide...

[Top Cat]

Originally Posted by LongtimeBravesFan

Top Cat, here is an article that was in my local paper Sunday about a woman who had Huntington's in her family and was tested.

link

If the article depresses you I'm sorry but I thought you might find it interesting.


Can you be a carrier without actually having the disease?

Thanks for that. It certainly touches on the moral dilema I am facing myself.

As for being a carrier, no you can't. (Except that there are some instances they really don't understand, as explained below in repeats of 30 to 39)

However, this is what I was told by Dr. Thomas Bird, Director of the UW Neurogenetics Clinic, founded 30 years ago as one of the first of its kind in the United States. He's a preminent expert on Huntington's, who practices and teaches at the University of WA.

If your genetic repeats are 29 or less, you will never get the disease or pass it on. Period.

If your repeats are between 30 and 39 it's inconclusive. They just don't know

Over 40 repeats, if you live long enough, it will get you.

The higher the number, the earlier the onset. Typical onset is between 35 to 50 in a bell curve.

My sister's onset was in her early 30's
One brother was early 40's
The other late 40's.

Most juevinile onsets have high repeats...60's or 70's. As you pass the gene, it typically increases in repeats.

Here's a medical explanation as well..

Genetics of Huntington's disease

The gene for Huntington disease on the fourth chromosome has been characterized in recent years. The chromosome is composed of genes, and each gene is composed of a string of molecules called nucleotides. The nucleotides are adenine (A), cytosine (C), guanine (G), and thymine (T). The gene is made up of a series of three nucleotides which form the structure of DNA in the gene. Each gene has its own unique sequence of base pairs. In Huntington disease, the DNA sequence, CAG (cytosine-adenine-guanine), is part of this sequence. This sequence may be duplicated many times in individuals, up to 26 times in the general population. The duplication of this segment is called a "trinucleotide repeat" in which these three nucleotides (CAG pattern) are repeated over and over again. Individuals with Huntington disease may have from 40 to over 100 repeated CAG segments. Specific laboratory and clinic evaluations are needed to interpret other repeat levels, which may be referred to as indeterminate, intermediate, non-penetrant, or reduced penetrance, with meiotic instability. It is not known how this repeated sequence causes Huntington disease, but research to develop therapies to treat Huntington disease is ongoing

.


As you might imagine, it is for this reason I am so fervently in support of genetic research, to include stem cell.

I got lots of skin in this game.

[LongtimeBravesFan]

If there was a possibility I had something that I would want to know. Not so much that I wouls know I was getting Huntington's but it would influence any decisions on having children.

[Top Cat]

Originally Posted by LongtimeBravesFan

If there was a possibility I had something that I would want to know. Not so much that I wouls know I was getting Huntington's but it would influence any decisions on having children.

Understood. My siring days are past me now. That's why I am going to be tested before my daughters are old enough to start their own families. If i don't have it, they needn't be bothered with the burden of knowing. If I do, I'll have to tell them. As it is, I don't want them to know until after I know for sure.

This is a thorny problem to be sure. There's a part of me that wants to know now, another part not so much.

Funny thing happened to me a few days back. I'm in Bellingham, WA. We're about 30 miles from the Canadian border and about 90 miles north of Seattle. The town is about 70,000 people. I was walking by a famous theatre here, The Mt. Baker. Arlo Guthrie is playing here in a few days and his name was on the marquee. His father Woody died from Huntington's. Arlo doesn't have it. Woody's death preceded the genetic testing (The gene was discovered in the early 90's) There's a part of me that would love to talk to Arlo about his experiences.

[TITANFAN]

Originally Posted by Top Cat

Funny thing happened to me a few days back. I'm in Bellingham, WA. We're about 30 miles from the Canadian border and about 90 miles north of Seattle. The town is about 70,000 people. I was walking by a famous theatre here, The Mt. Baker. Arlo Guthrie is playing here in a few days and his name was on the marquee. His father Woody died from Huntington's. Arlo doesn't have it. Woody's death preceded the genetic testing (The gene was discovered in the early 90's) There's a part of me that would love to talk to Arlo about his experiences.

I did not know that about Woody. I've been a fan of Arlo's for years. It just wouldn't be Thanksgiving without a trip to Alice's Restaurant.

[jtur88]

Having said what has been said, I hope everyone realize that age is an important factor. When a person is over about 60, it becomes a whole different issue, and such people often really do want to get out, and with pretty justifiable issues, and it would be a terrible ldisservice to force them with lockdown to continue lives that are no longer of value to them. If in fact there is a blanket law in the state that covers everyone regardless of age, that would be a terrible thing to inflict. It would not be doing a favor to take a person who, even though free, wants life to end, and force that person into incarceration in order to keep him alive for decades.

My mother died at 97, and I found out later that she had contemplated suicide for years, and had even tried it once. She was very sad and depressed, although not in pain, and was constantly surrounded by people whose only objective was to keep her alive and prolong the misery.

In many cases, intervention is the appropriate course. Many young people consider suicide, and they can either be treated or they will just get over it on their own. Few, statistically, who consider it actually do it---so few that one can wonder if such a drastic effort is worth it, when often all that is needed is a quick-fix in lifestyle. Most teen agers who commit suicide, probably only needed to get away from their school or their parents or their ex-crush for a while and get their head back on straight. One caring friend can do more good in a weekend than any hospital can do in lockdown in a year.

[jtur88]

Several years ago, I created a poll at MisterPoll.com on this subject, and I was quite astonished by the results. This is not a scientific poll, because participation was voluntary within a large sample. But among those who chose to participate, the results were revealing. There were 283 respondents, and the results are at

Mister Poll: Teen Suicide

[Nocahoma]

Originally Posted by LongtimeBravesFan

Can you be a carrier without actually having the disease?

The answer about "carriers" is a little more complex than that. Huntington's does not manifest until the patient is well into their child-rearing years, so it has often been passed on before the person knows that they will develop the disease. Woody Guthrie is perhaps the most famous person to contract HC, having inherited it from his Mother. Demonstrating Top Cat's statements, his son, Arlo Guthrie, does not have HC.

Anyway, it's an autosomal dominant gene, which (if my Mendelian genetics haven't completely left me) means that you can't "carry" it without expressing it. The 50/50 odds jibe, but only if just one parent has it.

I need to check this, though...

[Nocahoma]

Jeez, I really should check for a Page 2 before posting stuff....

[LaxD]

Get somebody, imagine how you would feel if he died and you knew that you could've done something to prevent it.

[Navin Johnson]

Its a good thing you told someone...telling someone that you have suicidal thoughts may make them less likely to commit it, however...my friend in college confided in my roomate one night that he was suicidal. My roomate told him that they should get sloppy drunk that night, and forget thier troubles. He agreed, went out for a beer run and never came back. His body was found the next day...