Hi all, this has been in the back of my mind for a long time however I've just read an article on HD and it's prompted me to investigate further.

My maternal grandmother had HD. Sadly my own mother passed away age 49 from an unrelated illness and at that time (as far as I was aware) showed no signs or symptoms of HD. Her brother is now 70 and has no signs. I do not believe my mother ever had genetic testing carried out but I do know she suffered severe anxiety for a period of around 10 years, over the age range where typically the disease can start to present symptoms. My question is, is it still likely that she may have had the gene and it still hadn't presented and should I be concerned.....I also have a 7 year old daughter??

I am avoiding contacting my father to ask questions as I don't want to needlessly worry him!

Thank you for any help.

Susan

Since your mother never tested and died of other causes at 49, you are still at risk. It is certainly a good sign that she didn't have decisive HD symptoms (many people without the HD gene suffer from anxiety), but it is still possible that she had the gene and died before onset. Onset can vary from infancy to very old age even though the average age is 39.5 years (with onset defined as the presentation of movement symptoms). My cousin was diagnosed at 86.

I wish I had better news for you but remember that research is advancing and we are hoping for major treatments within the next few years. And we are all here for support.

The anxiety was linked to her fear of developing the disease and the chance that it would then have the potential to be passed on to me. So great was her anxiety she needed to take anti anxiety medication to cope.....she managed to come off the medication once she got to around 45 only to then be diagnosed with cancer a few years later. Still breaks my heart to think she worried that much for those years only to be taken with something else :-(

I think I need to speak to my Dad, I guess to initially find out if she was tested then I'll take it from there. Thanks for your reply Marsha, much appreciated.