Hello, Atypical Cystic Fibrosis... I wonder if anyone can help please.
I am 46 years old I have had bronchiectasis diagnosed in 2008 by HRCT after suffering symptoms all my adult life to that point. I was put on Azithromycin which was wonderful but now 14 years later I was having increased breathlessness and non infective bronchiectasis symptoms. I have an element of asthma too but all the tests are pointing to fairly mild asthma. I have had an array of tests by a difficult Airway team to which I had a new CT recently which showed no evidence of bronchiectasis which is really strange as I still get excess sputum and would be v ill v quickly without Azithromycin.
The respiratory teams are now all but dismissing me and de valuing my symptoms. There was gastrapping and thickening of my Airways on the scan still however and the only condition I have found by researching myself is possible late onset atypical CF. Does anyone have any further information, help or guidance for me as I find myself with no support at the worst time and my health in steady decline??"