Recent content by taralmc

2 CF causing mutations does NOT necessarily mean CF. My daughter has 2 mutations and does not have a CF diagnosis. Most of the time 2 mutations means CF, but not all of the time. My daughter is 2 and a half and has been seen at 2 very good (CF accredited) children's hospitals in Philadelphia...

Hi Lauren, My daughter is in the same category as yours. Labeled "CRMS", she has 2 CF genes - one very common & the other very rare. She has no symptoms and passed the sweat test (when she was a newborn). She is 2 now and still has no symptoms (THANK GOD). We go to St Chris's in Philadelphia &...

Hi, My child has an unusual case. She has 2 cf genes but one is extrememly rare and they don't know much about it. She passed her sweat tests and has no symptoms as of yet. Two years ago, when we got an inconclusive newborn screening back, we called both CHOP and St Chris's to see where we could...

*the above post should say, my daughter does NOT have the phenotype*

Hi Liz, I am sorry for the worry that you are experiencing! I have an 18 month old who has the genotype for CF (2 CF genes) but does have the phenotype (meaning she does not have CF symptoms and God willing it stays that way). I think the screening tests done in the hospital may vary from state...