Huntington Disease Lighthouse Families

For HD families ... by HD families

It has been awhile

Posted by tallboy31 
It has been awhile
November 17, 2016 06:59AM
My mother was diagnosed with HD when she was roughly the age I am now. I am 43 years old, I had the pre symptomatic test done and the result was a 43.

It is difficult to be sure of any kinds of symptoms as yet, I know the only real way to know is to goto a neurologist and have them do the tests like walking a line, etc etc.

I was also wondering, if anyone has heard about this? []

It is about a drug that is promising, but i have heard this before where they say that a drug is promising and then you find out that all a sudden, it is not quite as promising as they thought it would be.

I would also like to ask peoples opinions, some of my neices and nephews have had kids, but did not get the HD pre symptomatic test, i have often tried to get them to have the test done, but they are assuming that since there parents (my brother and sister) have not shown any symptoms yet, that this probably means they arent going to get it, or need to worry about it, does anyone else have the same thing happen? people being stubborn about getting the test and havving kids?

Edited 2 time(s). Last edit at 11/17/2016 07:13AM by tallboy31.
Re: It has been awhile
November 17, 2016 08:11PM
It's not about being stubborn, I think that's a poor choice of words. Num 1, they don't see symptoms in their parents, and so in their eyes that gives them hope for their future, and that is all they have is hope. Just because some people find it easy to test like myself, does not mean that others don't find the thought of possibly knowing that their whole future could be filled with sheer horror a little bit daunting to say the least. Nobody should be pushed to test, because they are the ones that would have to cope with having their whole future ripped out from under them, not you. Just something for you to think about, and maybe see a dif perspective other than your own...I just think it would be very kind of you to leave me alone, because believe me they are thinking about this all the time, and are scared, and just want to live for today. What is your point in wanting them to test, they already have their children, now, if they didn't already have children, that is a time to encourage, but not push testing, they already have their children, what is done is done, let them just enjoy their lives for as long as they can, until either they become symptomatic, then testing needs to be considered, or when their kids are old enough to have children, then at that point they owe it to their kids to test

Edited 1 time(s). Last edit at 11/17/2016 08:16PM by Barb.
Re: It has been awhile
November 18, 2016 12:55PM
Hi Tall boy.

That is a promising study which is currently in Phase 1 clinical trials, meaning it is currently being tested on 36 patients with early stage symptomatic HD to test for safety and drug tolerance. (in Munich, London and Vancouver) Each stage of the clinical trail process brings us one step closer. This treatment aims to turn off the gene producing mutant huntingtin protein, with hopes of stopping progression and in some cases reverse effects. Keep a close eye on this one. It's exciting. a shot in the spine every 3-4 months is well worth not developing HD.

Regarding testing, sound, sage advice from Barb. Did you know that of all the adults over 18 living at risk for HD, only approx. 10% choose to do presymptomatic testing? It is a very personal choice.

Here's hoping.
Re: It has been awhile
February 27, 2017 07:58AM

Edited 1 time(s). Last edit at 02/27/2017 07:59AM by tallboy31.
Re: It has been awhile
February 27, 2017 11:01AM
My wife has Huntington's Disease and she is in late stage at this point, living in a nursing home. We got married late in life, around 35 years of age at the time, and we had a honeymoon baby.

We didn't go the route of testing prior to our marriage for various reasons. Being stubborn was not one of the reasons.
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