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    • #18499
      Jenny Livingston
      Keymaster

      In this post, Bailey asked, “What do you wish people without CF knew about living with CF?” It can certainly be frustrating when others don’t understand certain limitations or effects of our disease, including healthcare providers at times. I want to continue the conversation Bailey started but take it a step further. What is something you wish doctors and other healthcare providers truly understood about living with CF?

    • #18501
      William Ryan
      Participant

      We’re not faking it. Yes, we’re this tired. Our bodies are internally fighting all of the time and that power struggle will wear anyone down.

    • #18508
      Tim Blowfield
      Participant

      I wish they knew a lot more about the effects of the faulty CFTR protein has on the whole body – not just the lungs – endocrine glands, muscles & heart, blood vessels, etc even nerves. And be open to seeking why TK is presenting effects in so many organs as well as the lungs.

      • #18538
        Luisa Palazola
        Keymaster

        I agree! My pulmonologist framed that for me at a young age, saying that every single cell in my body was affected. I now take this everywhere I go. I also wish folks would acknowledge the mental impact!

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