Hi there, I have 2 copies of the RH117/7t just like your daughter. Your right in that it is rarely known about, but I honestly believe that it will become more apparent as more newborn screening becomes the norm throughout the world. That was how i was found, my son has CF, he has the d508 along with my RH117. If I can recall at the time the doctors here in Scotland found only 4 with the double RH117, one in edinburgh from a fertility centre, i guess he was having trouble concieving, two more newborns in wisconsin and me. I had no troble concieving, father of two. For a while maybe 3 years I attended the CF clinic in Glasgow, this was mainly out of the doctors curiosity to this, and as he said, you never know how this will pan out, after 3 years there was no sign of cf symtoms that were ongoing, maybe it answered some questionable happenings when I was a child, had my sinuses cleared out when 8, and had a stay in hospitle when 5 with severe stomache pain, they never found out what caused this.
I am now 48, overweight, smoked for 27 years, drunk heavily for most of my teenage and twenties years, typical Scotsman you might say.
It does to be honest frightens me sometimes, sometimes when I get cold and it does seem to set in worse for me and lasts longer, I think to myself is this it, is this the CF kicking in. Its good that they are seeing your D, and that there are prepared to give her treatments. One last thing that springs to my mind, is that here in Europe, I think it was France amongst other countries, there was talk of removing the RH117 from the official list of CF genes, wether that happened or not im not sure of. We treat our son pretty much that he has CF, they have said that he has a 'mild case', and I do hate to use that term, but his treatments have increased, he recentlty started pulmozyme and he looks to be responding to it, Fev over 100 and increasing, he has his pancreas working, maybe not 100%, but way much more than having to take enzymes, I take it your daughter's pancreas works, that is the main 'benefit' of the RH117, it seems to overide and has the pancreas working.
Anyway, I not on here that much now, much to the annoiance of some of the members here, but if you want to ask me anymore just pm me or open forum it. Last thing if you look at my old blog under the name of 'dyza' you will find lots of pages and info about myself and my doctor visits and my insight to the Rh117.
craig