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Thanks Littlelab4CF . . . . you have provided alot of information regarding the genetics of CF, though I admit I felt myself somewhat confused at times. I do feel that what I clearly understand now is that genetics are not all cut and dry . . . . they are not all black or white. It seems with...
Thank you so much momofmia . . . . . .my son's sweat test is negative, thank all of the Gods! I hope and pray you will soon have better answers for your daughter and that she receives the right treatment for her symptoms. Being in limbo with CF or CFTR metabloic disorder has a "hell" of its own...
Thank you so much Momofmia. It's heartbreaking to hear of your daughter's struggle, and I hope you are able to soon receive a diagnosis that will help with medications. I have been prescribed Pulmozyne in the past, and it was not covered for me, as many other things prescribed in the past. It...
Littlelab4CF,
Thank you for your reply, but I am afraid it has left me a little more confused. If all I need is a negative full genetic sequencing test done to ensure I do not have CF, then I will have the lab test immediately! I am trying to find out which one was performed by Duke, but the one...
I am a bit speechless at the empathy in all of your replies. I feel somewhat out of place as my physical issues now are not nearly as complicated as what most of you describe. It may very well be that I have nothing more than chemically induced lung disease, but man, those two sweat tests are...
Thank you everyone . . . . . i'm sure you can all imagine at some level the frustration with being diagnosed as a 'maybe'. I have been so turned off by MDs, and now, not having a regular MD is a problem, too. I need one to refer me to a CF clinic, atleast this was what I was told by UNC. I have...
Bill, thanks again for your opinion. I am looking into the possibility of going to another state, so I appreciate your referral. It's tough as I worry that if genetics remain negative, I will still be a "gray area" patient, and quite honestly, I find this to be very difficult. Mostly, it is...
Thank you both for your input. Melissa, I have heard of the nasal differential testing, but it is my understanding that is is still a research test, but does carry promise. I was told it is only done a JohnsHopkins in Maryland, and in many places in the UK. I would like to have the sweat tests...
Thank you for your reply, Bill,as well asyour offer to help. It is my understanding that both UNC hospital and Duke University are CF accredited. The first workup many byears ago was at UNC, and entailed pancreatic function testing, too. I do not believe that Duke did anything more than repeat...
I hope it is ok to post here. I have not been diagnosed with CF, however, I have also been told that there is a possiblilty that I do still have some mild form of the disease. My history is a little complicated, so bear with me. I am 42 years old now, and I underwent CF testing at UNC hospital...
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