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  • My pet hate is the constant reference to CF as a Chronic Illness. That provides the NDIS in Australia to refuse to fund persons with CF. It also causes people to think of CF as ‘just a lung disease’. CF is realy a DISABILITY – as much as is Downs,Fragile X, Haemophilia and so many more conditions that are accepted by the NDIS and like bodies. CF…[Read more]

  • Wow! The passage “Here is what my pre-existing condition has made me fight through physically already: The removal of my appendix, gallbladder, large intestine, colon, uterus, and more; hemorrhaging lungs, bleeding colons, and sinus excavations; two G-tube surgeries, two J-tube surgeries, implantable cardioverter-defibrillators, intensive care u…[Read more]

  • Attitude makes a HUGE difference and what is wonderful is the attitude of so many CF’ers. ‘We shall overcome’ is not just a negro spiritual hymn but is the attitude of CF’ers that helps them achieve huge amounts. I prefer to consider CF itself as not a sickness but it is a disability. The mutations do predispose to sickness but are not themselves…[Read more]

  • Tim Blowfield posted a new activity comment 5 months, 1 week ago

    Yes and almost certainly colonising the conjunctivae (just the ophthalmologists haven’t looked and tried to isolate it from there) Our GP did a MC&S on the ears and found it was there (just like a dog! – I do treat her like a dog! I am a Vet.). I am not sure how deep the Pseudomonas is in the airways or whether it is just in the Upper Resp…

    [Read more]

  • My wife, who at 77, is probably the third oldest person in Australia with CF. For 66 years we did not know she had it though we did know that she had issues that stumped Doctors, could not tolerate altitude, had bowel disease that eventually led to her losing all her large interesting, had shortness of breath that was often diagnosed as Asthma,…[Read more]

    • Tim, wow! Your wife sounds like an amazing woman! I’m always fascinated by late diagnosis stories! Did I understand this right, she also has pseudomonas in her ears??
        • Yes and almost certainly colonising the conjunctivae (just the ophthalmologists haven’t looked and tried to isolate it from there) Our GP did a MC&S on the ears and found it was there (just like a dog! – I do treat her like a dog! I am a Vet.). I am not sure how deep the Pseudomonas is in the airways or whether it is just in the Upper Resp…

          [Read more]

      • This is amazing and fascinating and thank you for sharing! I also had my large intestine and colon removed, as well as have heart-wiring issues (I have a pacemaker and defibb, and am on meds for life), which are not things I originally would have connected with CF, but my doctors eventually did. It’s so surprising to learn how much more global (in…[Read more]

    • What is normal. In a Physiology practical some 55 years ago my lecturer wrote “Whats normal? I am! but how do you know the frog is?”. We (his students) all wanted to know how he knew he was.
      But we do need the concept – often confused and vague – to help us make sense of ‘it all’.
      CF is such a chameleon of a disability (I purposely refer to is as…[Read more]

    • Tim Blowfield posted a new activity comment 5 months, 1 week ago

      “Atypical” CF. – Not so Atypical!
      While the problems of CF are most frequently of the lungs, pancreas, and bowel it is much more complex. These organs (and many others especially the eyes, nose, urinary and reproductive tracts) all have mucous secreting goblet cells. In CF the mucous is thick and abnormal because of the lack of chlor…

      [Read more]

    • Tim Blowfield became a registered member 1 year, 3 months ago

      • Hey Tim, thanks for registering! I hope you’re well. I’m Tré, one of the forum moderators. What are some things you’re interested in chatting about here?

      • “Atypical” CF. – Not so Atypical!
        While the problems of CF are most frequently of the lungs, pancreas, and bowel it is much more complex. These organs (and many others especially the eyes, nose, urinary and reproductive tracts) all have mucous secreting goblet cells. In CF the mucous is thick and abnormal because of the lack of chlor…

        [Read more]

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