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my dd has this mutation. She was diagnosed at birth through systematic screening. she has no digestive issues but culture CF bugs and lungwise has a classic CF i would say.

My dd has exactly the same mutations as you. she was diagnosed at birth thanks to systematic screening. she also has only respiratory symptoms but it ssems that on respiratory side she is just like everybody else in spite of the milder second mutation. Sorry to hear about the diagnosis but you...

HI, I always avoid this kind of stuff, even though my DD is disapointed, she eventually gets over it. There are plenty of other fun things to do and lung damage is permanent. that's my take on it, but there are others who probably see it differently.

Hi, My DD has cultured mucoide PA for the second time. THe first time was 1,5 years ago and since then she wsa clear. Our doctor said that they don't know whether it is the same bug coming back or a new one. Hs anyone had an experience of eliminating mucoid PA? I thought it was always the...

My daughter is 10 and has the same first mutation as well. she is pancreatic sufficient and doing relatively well. She had several PA infections though, but hasn't been hospitalized yet. It is difficult to tell who the desease will evolve based on mutations, so i think it is a good thing that...

no, from what i heard, you don't need to

I have spent a fortune on different supplemental treatments prescribed by a naturopathe, who also happenned to be an MD, which kind of made me more confident. And the result: zero! Having said that, i do believe that a healthy diet and lifestyle are very important - whether you have CF or not

I am confused because as JDsmom said, the study is aimed at heterozygous DF508 people, my understanding is that it does not target specifically residual function.

Oh, thanks, I guess i missed the results of this. so basically they ar not going to do anything specific for residual function anymore from what i gather. My dd has one copy of delta 508 but she is too young. thanks for answering

Hi all, Does anyone has any news on the pilot study of Kalydeco and residual function mutations? On clinicaltrials.gov website it says completed and has results, but i have trouble deciphering the actual results. Maybe anyone had beteter luck? thanks

I don't let my dd play in the dirt and go near any stale water

my dd cultures it regularly, especially when she has colds. They treat it depeding on symptoms or if she hasn't been treated with antibiotics for a long time

my dd cultured PA when she was 15 m/o. We treated with 3 cycles of Tobi and it was gone. Then it came back a year later and we got rid of it again. She hasn't cultured for 3 years now (touch wood)

according to clinicaltrials.com VX661 is also for tow copies of DF508. did i miss something?

sounds exciting for those with these mutations!

IMHO I would still push for genetic testing (full genetic sequencing). This is the only way to rule out CF. I hope it is not CF, but you cannot be absolutely sure with the sweat test (false négatives are common)

I have never heard of a false positives either, false négatives - yes. I agree with Printer, you have to go to a CF center to get definite answers.

I am surprised that given chest infection that does not clear up and trouble keeping up weight, they are not more concerned and don't suggest preventative treatments. I mean these are classical symptoms of a CF exacerbation.

we have one, Honeywell I think. It helps to clean the air of odors, dust etc, but i did not see a hige difference coughwise, probably b/c most of the time my dd is outside anyway.

I am interested too, my dd has residual function mutation