A very rare neurological disease known as neuroacanthocytosis has affected members of my family. 20 years ago, at the time of their diagnosis, the disease was believed to be autosomal recessive. Less than 50 people in the world were known to have this illness. Three of my father's siblings developed symptoms in their late 30s and were diagnosed. They passed away about 5 years after their diagnosis. There was no known history of this illness in our family. The doctors believed my fathers parents were both genetic carriers. Both carriers are needed for the disease to develop which is why it is so rare. My parents spoke with two top specialists, and both of them told my parents that there was a 1 in a million times a million chance of my developing the disorder and that they did not need to worry and that they could have children.
I am a worrier myself and was diagnosed with OCD a few years ago, so I may be overthinking things here: There is a chance I could be a carrier, which would not be a big deal because the only way for my children to develop the disease is if I somehow married another carrier which could be extremely extremely unlikely. But I was reading online and it said "Carriers usually do not show symptoms." The word usually caused me to become very nervous, does this mean I could still end up with the disease as just a carrier? Would I only develop very mild symptoms if I am a carrier? What would cause this? and wouldn't the doctors have mentioned this to my parents 20 years ago?