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scratch that request for gene combo leecee.... just found that :)

leecee what is your daughters cf gene combo? and when you say 'sick all of the time' what were her main symptoms? thank you for your reply!

Thank you for this!! I've been on the phone with her doctor the last few days regarding Kalydeco.

Ratatosk thank you for taking the time to post! Thanks for the info. It helps so much to hear each persons experience.

Hi aboveallislove! Thank you for your kind reply. I would love more information on Kalydeco, what is it?? Does it help prevent infection? After I called the city this afternoon about water and spoke with a very patient and thorough man about bacteria, I realized that PA is just everywhere...

Hello, my 3 year old daughter has this genetic combo and has been diagnosed with CFRMS. What is Kalydeco? Also, do any of you have the digestive side of the disease? My daughter seems to have no symptoms of that side of CF....

My daughter will be 3 in July... just catching up on this thread about pseudomonas... Three cultures have come back positive and we have followed up with Tobi. This latest positive was after a season of almost no swimming. I understand both sides of the situation - letting kids do what they...

Thank you everyone for your replies. I am resolved to post and interact on here more often! Update on Mia. She will be 3 in July, and was hospitalized last September with pneumonia. When she got out of the hospital, she tested positive for pseudomonas and went through a round of Tobi...

Hi everyone!! I have to say I got a bit teary finding this thread. I thought I wouldn't be able to find others going through what we have been going through! My daughter will be 2 in July. She was born with the DF508 and R117H (7T) genetic combo. She was labeled CRMS and we have felt from...

Hello CF community! I am new as of this afternoon to this support group. My daughter, Mia, will be 2 on July 20, 2014. She has the indicated CF gene combo and has been labeled as having 'CFRMS', Cystic Fibrosis Related Metabolic Syndrome. Anyone else out there with this diagnosis or gene...