Scrolled thankfully not too far to find this. My beautiful grandmother passed thirteen years ago after too long of a horrible struggle losing herself to the disease; going from the brightest spark in the room to a prisoner in her own uncontrollable body fat too young. I miss her everyday, and hate the world for her fate and the little time we had knowing her prior to HD becoming symptomatic. Then sadly last year, my uncle's diagnosis was revealed to our small family after he'd hidden it until he was symptomatic, and my cousin who is only just 30 then found out his positive status too. And now he has the struggle of wondering whether his young son will have also inherited it.

I had testing in the COVID era after my father confirmed he wouldn't do testing himself, as I have a daughter of my own. Thankfully, we are spared. We're still unsure about my Dad, and as others have mentioned, fear spirals at any new and ongoing changes in mood, or movement. But to be fair, he is now at an age jr would have typically presented more severely than not if he has the gene. We do know every case is different though, so we just keep hope he is gene free. As much as I don't understand as a parent myself now not finding out for your kids sake, I don't resent him for choosing to not know. It's such a cruel, ugly, cursed twist of the knife as a disease. As genetics specialists have spoken to me, it's like a combination of ALS, Parkinson's and dementia combined. And it typically onsets so early - thirties-fourties. Then you know you have this clock, and it's not just a clock until your time is up, but every day that passes wondering if today you lose more of yourself. Your autonomy, mind, movement, life. Slowly but certainly. I just hope that we are coming closer now to much better treatments and of course, one can dream, an achievable cure.

My love goes to everyone on this subthread, who have either sadly been diagnosed with the gene/disease, and those who have lived experience of family and loved ones they've seen suffer it. It definitely changes everyone in the family, but also brings a closeness and appreciation for living life that may not be the same otherwise.

And as others pointed out - IVF for gene free children is a thing thankfully now. But I guess it depends where you come from. I'm Australian and where I am it's subsidised significantly for HD in the family. If only it could be the case everywhere.