Toss out the guilt. You have done nothing to feel guilty about. You are ill. Governments, the medical profession - that's a different matter. They ought to be swimming in guilt for ignoring this disease for so long and for denigrating patients!
We need to treat the cause! This has put life on hold for myself, my sons and my granddaughter! So few doctors detect without the patient telling them..it seems like its up to us to research and ' teach our primary physicians' to refer us to Geneticist!