Rot thanks so much for getting back to me! Actually being in contact with someone over this is giving me great comfort!
I will definitely look for that paper, I have already called the local library but no luck there (maybe my Doctor can find it?) I remember a few years ago searching our condition on the internet I came across a similar study with only a few people involved I remember one of them was from Singapore. You're right no real follow up, just the beginning stages of treatment. Not much help.
So far this group has been the most help I have ever had!