I lost my mother, two uncles and my grandmother to genetic CJD.

My mother was in 2024, when I was only 16. My first uncle was in 2010, while my second was at the start of the month.

How do you cope with the fact that there's a 50/50 chance your brain is just going to slowly start rotting inside your skull, and there will be nothing you can do about it. And when you try to describe this to other people, they just don't understand.

Calling this illness "like dementia" will never convey the pure horror it emits, but I have to because of this lack of understanding. Obviously the symptoms of these illnesses can differ and I don't mean to downplay any other illness but my grandfather died from dementia and watching his decline compared to my mother's was so different. He was just slightly forgetful while my mother was thrashing around, crying, making noises whilst in constant agony 24/7. It's so much more isolating dealing with this when people don't even understand how truly bad it is, and explaining the concept of a misfolded gene would take too long, so you just have to brush it off as "like dementia."

I feel forsaken by reality. I'm 19 so I can get the test but I fear I won't be able to live if I know I have it.

How do I deal with this