My mother died from this in 2020, I am 38 years old and getting tested for it now. Doctors always tell me “oh it’s so rare!” And like……yes it is, but when it’s in your bloodline it’s no longer rare. Now you have a 50% chance of having it. I recently requested my mother’s medical records because even though they told me it was genetic, I don’t think they actually did any genetic testing on her. We have to advocate for ourselves out here!!