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Hi Sarah...nearly same story as we have..my baby girl was diagnosed with df508 & r553x shortly after birth (meconiumileus).
We also had no idea we were carriers and her big brother also is healthy (not known if he's carrier).
46,5 % sounds great - tell her to go on like this!!! :-)
Stay strong...
My little one catches every infect which is around! Two weeks of antibiotics, 10 days to 3 weeks without and then again... :-/ She's not in kindergarten, but has a big brother who is and so...
When you are healthy I don't think, it's a problem to be in the same room, only a small part of the meds comes into the air and maybe a tiny part to your healthy lungs. Never heard of someone who had problems with this . Our doc didn't warn us about something like that .
Hello Kaethe108,
my little one has same mutations as yours! How is she doing?
At the moment we have neb sessions in the morning and in the evening with 2 ml Mucoclear 3% and Salbutamol. Physiotheraphy 1 time a week, Mulitibionta vitamins, K-Vit, vitamin D, Creon for kids, antibiotics when needed...
just found that: Study in People with One Copy of the F508del MutationIn addition to the Phase 3 studies in people with two copies of the F508del mutation, Vertex plans to conduct an 8-week exploratory Phase 2 study of VX-809 in combination with ivacaftor in people 12 and older with one copy...
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