I have just learned that my grandmother died 45 years ago from HD. My mom was young at the time and her dad had left them when her mom got sick. So, she was never really clear about what her mom was suffering from, apparently. She always just told us muscle deterioration. While researching my family geneaology, I discovered that my grandmother's relatives had HD. My Great Grandfather died young in a work related accident, but that is the parent with it in his family. When I asked my mother for more information, she said no it was not Huntington's, that her dad told her it was chorea. I told her that it was pretty much the same thing!!!

So, my question is....

My mom is 59. My older brother is 36, I am 34, and my younger brother is 30. If my mom has it, what are the odds that it would not have shown up in any of us yet? When do you consider yourself truly out of risk, or do you ever?

I can't answer all of your questions. But I will say I have a similar situation in that we never knew HD was in the family until my FIL was diagnosed with it in his 70's. His father abandoned the family so that history was never known and probably it came from that side, altho it could have genetically mutated since the CAG count is low. I think that the odds are looking good for you in that your mom may not have it (or else have a low CAG) since she is older and showing no symptoms. But then there can be instances like my FIL where it has a late presentation. In my opinion you never consider yourself out of risk unless you take the genetic test and it is negative. But think carefully and plan (such as long term care insurance etc) before rushing into testing. Right now you're doing the right thing to educate yourself. I remember what a huge shock HD was to me.

You consider yourself truly risk free when you test negative. HD can start at any age - your risk is the same as anyone elses. It would be quite unlikely for you or your brothers to develop HD before your mother. So if she is doing well, then that is a good sign for you and your siblings.

Take your time, finding out about HD completely out of the blue is so tough, many drive themselves crazy thinking about it. Just take things one step at a time and keep on educating yourself on the subject.

Take care,
Matt.

[www.hdyo.org]



Edited 1 time(s). Last edit at 02/11/2011 08:21PM by just1moreperson.

Before it was called Huntington's disease it was called Huntington's chorea. All your questions are pretty hard to answer. Most people show symptoms between 30-50 yrs old. However some have very late onset. The easiest way to clear you all is for your mother to be tested. If she is negative you all are. Otherwise you all will be technically at risk and have to test separately to know that you are negative or not. The true risk, statistically, stays the same, but the likelihood would fall as she ages with no symptoms. She has a 50/50 chance of HD assuming your research is correct. And that gives each of you siblings a 25% chance.

You are just starting to dip your toe in the water though. HD is a very slow thing. More than likely you have years and years before any true concern about HD affecting you and your siblings. Especially if your mother is symptom free. For every answer you will be given, there is an exception. So that's why we can't answer you really. I think most would agree you have time to ponder this... and this new information is not a screaming emergency. But something I wouldn't ignore either. Some people are more than content, even being fully educated about HD, not testing. Others feel the exact opposite way and have reasons that compel them to test. For instance your mother may feel it's her responsibility to test first so all three of you might be relieved of the angst yourselves.

Welcome to the forum... we will try to help ya out with whatever you are thinking about.

Thank you all for the information to consider and such quick responses. There is so much for me to think about.

Hey there, sorry for the reason you're here. Do you have any children yet yourself that could be at risk?

I do have a 6 year old. That is the frustating part, because we did ivf. Had I have known HD was in the family, I certainly would have done pgd...

This is why ya have to take your time. There are a lot of "if I had known" stuff about HD. The nice thing is you have time to find out a lot of it. The "if I had known" turns into "now that I knoW" and that's the position you want to work from. Does your mother get what you are getting yet? She's the one who would be most or first impacted by this. Have you located any living relatives with HD in the family yet? The more I think about it, the more I am wondering if back then there was a correct diagnosis. Chances are someone in the branches of the family will have it and confirm paperwork. I think I would want to know that.

That is why I started asking more questions, because in researching my family tree I contacted a relative of my great grandfather. She asked me if we had huntington's in our family because her grandfather was brothers with my great grandfather. Her grandfather, mother, and a sister all have and/or have died with HD. She also told me that my great grandfather and her grandfather had several siblings with HD. That on top of the fact that independent of this information, my grandfather says my grandmother had chorea. And my mom confirmed that all the symptoms were what her mom had. My grandmother was an only child. She had two children. My uncle is around 65 and no symptoms and no children with symptoms.

I am really suspicious that my mom may have had more information than she lets on. When I first asked if it was huntington's she didn't ask me what that was and she said I have to live my life and not worry about it. I highly doubt she will test. My brothers and I are going to have to sit her down and get more information.

eRIC IS RIGHT THERE ARE NO CERTAINS WITH HD. I AM HAVING CLEAR SYMPTOMS AT AGE 39 BUT MY MOM IS 60 AND HAS NO VISIBLE SYMPTOMS. SHE WON'T TALK ABOUT IT.
MELISSA