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should I get tested
- Thread starter navyguy
- Start date
W
welshwitch
Guest
Why not? If you do have CF, you can get access to meds and feel much better!
I have had sinus problems for almost 3 years now. I have had sinus surgery and still no relief. Then a couple months ago I had a spontaneous pneumothorax (collapsed lung) I saw these are both symptoms of cf should I get tested
i was diagnosed at 35 after my children were tested. They are both carriers and I have 2 mutations and have CF. I feel so much better after over 2 years of treatment. That said I see your username is navy guy. CF will disqualify you for military service.
LittleLab4CF
Super Moderator
Having genetic testing for CF probably isn't going to result in a CF diagnosis. Sinusitis with a single incident or infrequent lung issues like a pneumonia or hemoptysis, coughing up blood, seems to be more often CF carriers. CF is a genetic disease that in theory means that a Cystic Fibrosis Transmembrane electrolyte Conduction Regulator (CFTR) gene mutation is inherited from each parent. The definition used to require both mutations be the same like DF508 but as 1900+ mutations were discovered, the definition broadened.
Now it is established that some CFTR mutations can cause CF in single occurrence or the one copy status given CF carriers. CF carriers were once considered asymptomatic or without any symptoms. It takes a while to grasp the scope and breadth of the disease itself. A new group has been created just for patients who are showing some CF issues but may be CF or a carrier genetically. Cystic Fibrosis Related Metabolic Syndrome (CRMS) is a wait and watch group of patients. Many develop pancreatic or pulmonary issues in time and adult CF specialists will knock off CF issues much faster than the general alphabet soup of specialists. I believe that specialists in particular are caught with blinders on, the fifty two years it took for my CF diagnosis is testimony.
Having the complete CFTR genetic test will answer CF in some fashion. With frustrating luck, you don't have CF and you must keep looking. Very soon a number of new genetic drugs will compliment the ones already available for certain mutations however they'll likely be another 2-3 years before FDA labeling. A genetic drug may be in your future.
LL
Now it is established that some CFTR mutations can cause CF in single occurrence or the one copy status given CF carriers. CF carriers were once considered asymptomatic or without any symptoms. It takes a while to grasp the scope and breadth of the disease itself. A new group has been created just for patients who are showing some CF issues but may be CF or a carrier genetically. Cystic Fibrosis Related Metabolic Syndrome (CRMS) is a wait and watch group of patients. Many develop pancreatic or pulmonary issues in time and adult CF specialists will knock off CF issues much faster than the general alphabet soup of specialists. I believe that specialists in particular are caught with blinders on, the fifty two years it took for my CF diagnosis is testimony.
Having the complete CFTR genetic test will answer CF in some fashion. With frustrating luck, you don't have CF and you must keep looking. Very soon a number of new genetic drugs will compliment the ones already available for certain mutations however they'll likely be another 2-3 years before FDA labeling. A genetic drug may be in your future.
LL