rose, I read your comment about not telling people if it is found to be recessively genetic - I just (about a month ago) found out my Ataxia is a result of Hereditary Spastic Paraplegia (another thing that people have never heard of!) that is genetically transmitted through recessive inheritance - so, jokingly, I now tell people that know us that my Ataxia is all my parent's fault! They have a slightly twisted sense of humour (like I do) and can see that it is meant as humourous, not malicious. They feel bad about passing this down to me, but they don't let that override their life - when they tell me that, I just remind them that it was totally out of their control since they didn't know anything about it. And until they had genetic testing of their own, they weren't 100% sure that they are where it came from.
I think in the long run some people can be unknowingly hurtful with what they say or how they act - I just try to ignore those people when I can. I'm fortunate in that those around me don't treat me differently - other than helping when I ask for it.