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  • What do you wish doctors understood about living with CF?

    Posted by Jenny Livingston on June 27, 2022 at 9:50 am

    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?

    Luisa Palazola replied 3 years ago 4 Members · 3 Replies
  • 3 Replies
  • William

    Member
    June 28, 2022 at 10:55 am

    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.

  • Tim Blowfield

    Member
    June 30, 2022 at 7:01 pm

    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.

    • Luisa Palazola

      Member
      July 8, 2022 at 12:24 pm

      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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