I have known my whole life that there has been HD in my family. So far my mother seems to be the only one who has not gotten it. I was always told as long as she did have it, there would be no way for my brother or I to get it. I recently took my son to Lebohneur's Children Hospital and he had some blood work done and we were sent to a genetic counselor there. I had made it known to her that HD ran in my family. She told me that even if my mother did not have it or show signs that she could still carry the gene and could pass it on to me and I could have it and it and it could be recessive and I could give it to my son. Which goes against everything that I was taught. So my question is: If my mother never shows any signs of HD and neither do I, can my son still have HD or could he carry the gene and pass it on?

If your mom not have the gene it is over, it is not possible to give it to next generation.

Anne
from Norway
not god in english writing

I've not heard of it being recessive. It can manifest in a person as I understand from my Doctor's. Probably not likely on a normal basis. With the range of cag counts it almost always expands in that certain range but there is no magic number of expansion. There is a range just below 35 where it can pass to the next generation and the expansion concept comes into play. Please don't write this in stone, this is what I have learned having the disease.
Mike

I think, calm down. Not possible to give it if your mom is negative.

Best regards from
Anne
Norway

Still astonishes me that a "genetic counselor" would think that information true. Shouldn't be surprised, i guess

The HD gene is dominant, not recessive. If your mother has two normal genes, then you do not have the HD gene and HD is gone from this line of your family.

It is possible to have the gene and not show signs well into old age. I had a cousin who became symptomatic at age 86. So while the chances of not having the gene look better and better the older you are without symptoms, there is never a time that you can rule out having the gene altogether unless there is a genetic test showing two normal huntingtin genes.

Sometimes people who have the HD gene die of other causes before becoming symptomatic. I have a friend with a grandparent who had died of HD and whose at-risk father died in an accident before the test was available. She remained at risk and had to test to find out her gene status (she is negative).

The HD gene does not skip generations but it is possible for the illness to do so. Think about my cousin. He did not have children but let's say that he did and passed on the gene to his child. Let's say that he had died at 85. It would have appeared that HD had skipped a generation but that would not have been the case.

Wow, do genetic's counselors have to take boards and get licensed like doctors and other health professionals. How this person squeeked by with such wrong information is beyond me.

Like Marsha said, your mom may be non symptomatic and still be gene positive. The only way to know for sure is for her to get tested herself.

There have been some families in which, because of gene expansion, the next generation became symptomatic prior to the parent generation even knew they were positive.

I hope your family is able to figure out what is going on with your son.

Patty

Thank you, Patty for offering this accurate advisement.

I have relatives who are "not symptomatic" according to this Moment in time. This is a moment. If your mom isn't showing HD now, doesn't mean she won't five, ten, or fifteen years from now. HD can occur in two forms, juvenile onset or adult onset. It has been diagnosed as young as age 2 and as old as age 90. The age of onset varies.

It is possible for a person to have the gene and die prior to experiencing symptoms.

It is possible for a person to have symptoms but be mis-diagnosed with other conditions (as my great grandma was diagnosed with Parkinson's and then her son was diagnosed with Fatigue Syndrome until a younger more recently educated doctor corrected the diagnoses.)

When people don't know their genetic status, I don't think it is wise to say they are "negative" or that they "do not have" HD. The wisest thing to do is assume you are at 50% risk until you know otherwise.

My mom was one of nine kids. There was a time when only one of my aunts was diagnosed with HD. Fast forward a few years and now there are six out of nine dying.

So, when I was a kid, I thought my mom is negative. I bought in to the premise that I had a 25% chance since my mom's status was unknown. But that was a lie. My mom tested positive and my chance is 50/50 like everyone else. I think it gave me a false sense of security to think that I had a 75% chance at life without disease.