caret icon Back to all discussions

Atypical CF

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??"

  1. I hear your frustration and concern. Wondering if genetic testing would give you some answers. Perhaps finding a cystic fibrosis care clinic near you will provide better care, some are associated with teaching hospitals and may be more inclined to help. Sharing a link to find a center, https://www.cff.org/ccd. Many in our community have been diagnosed later in life, not uncommon. -Lynne (team member)

    1. Thank you Lynne, yes I think that's the route I need to take. Its very kind of you to reply and be understanding so thanks again

  2. I was diagnosed at the age of 53 with Cystic fibrosis. I fought 8 5 years and got worse before finally finding a pulmonary doctor who transferred me to Washington university to the CF team and they did genetic testing and found I had Cystic fibrosis. I'm so sorry your going through the same things I had to go through.

    1. Thank you for your concern over this Tinette it's really tough when your not well long term like this and I really hope now you have a diagnosis your symptom control is better. I can't tell you how much I appreciate someone like yourself taking the time to try and help and share your experience. I have been advised to get a genetic test off the Internet but I have left a message with one of my respiratory team in Manchester UK to see if they will refer me to a CF specialist as I am confused over what test would be right for me etc, which sounds like eventually was the right way forward for you and your care.
      There are not many people who would understand but I know what you must have been through, your a very tough person to have coped as long as that.

or create an account to reply.