Hi
I'm sorry to see that you're in such a minority as it does appear that there's no answers. This 'bump' up of your post might produce one - who knows! However, if not, you could try Ask An Expert - Ask a nurse for some more information. Takes a couple of days for a reply, but if no-one else here has got the gene mutation the nurse might be able to help out a little more.
Kindest wishes,
Lesley
