And you are correct my friend. So what is the answer for us? Is there an answer? I think the best way to describe us all is having perseverance and doing the best we are able to stay positive. We do get a reprieve sometimes tis true, and that’s a good and wonderful thing. I think originally there were so few of us it was all considered “rare” but being as there are more and more of us I pray continued research will find more and more answers. In the meantime we have this place here to share. Praying for you always. Irene5