Genetic counseling
I’m having my first genetic counseling appointment soon. My father was diagnosed in 2021, and then his brother was diagnosed in 2023. He got genetic testing, which came back positive for the C9orf72 mutation.
It’s been 5 years of worrying about whether I carry the gene too, and I’ve decided I don’t want anyone to know I’m getting tested. If the result is positive, I’d hate for people to become overly aware of every weakness or stumble, whether it’s disease-related or not. I don’t want this to be a relevant topic in my life until I show signs of the disease, and that includes the people I love seeing or treating me differently.
If it turns out negative, I plan on telling the people I love and celebrating.
Not even my partner knows I’m getting tested. I don’t want anyone but me to go through this, because I know firsthand how painful it is.
Have you been through a similar experience, or do you have any advice? It would be really helpful to have someone to talk to about this.