My husband's family has a Kidney disease that is similar to Alports Syndrome, It is called Medulary Cystic Nephrono Phitis...anyone every hear of this?

I can't help you on this one but to get people to respond more approraitely to your thread you may want to change the title from Alports to Medullary Cystic Nephronnphitis.

I did see a bunch of stuff when I typed it into my search engine.

Good luck!