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    • #14997
      Kevin Schaefer
      Participant

      Hey everyone! Congrats on making it through another week of quarantine.

      For a little inspiration, check out Bailey’s latest column. She writes about the empowerment that comes with having a pre-existing condition like CF. Whereas society tends to view people in rare disease communities as weak, Bailey flips this concept on its heels.

      This passage in particular sticks out to me:

      “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 units, pacers and pyloroplasties, fundoplications and infections … and on and on and on.

      Would you want to go up against that?”

      Hope you all enjoy this one.

      Do you have any takeaways from this column? Do you agree that having cystic fibrosis can be a source of empowerment?

      Have a safe and relaxing weekend everyone!

    • #15131
      Tim Blowfield
      Participant

      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 units, pacers and pyloroplasties, fundoplications and infections … and on and on and on.” even exceeds that of My wife.
      Once we thought her various problems were all separate entities but we now realise they are almost certainly all the result of that faulty CFTR protein causing not just thickened mucous but electrolyte abnormalities within every cell in her body resulting in cardiomyopathy and atrial fibrillation from increased intracellular Potassium and Calcium in the cardiac cells, Parathyroid Adenomas from increased intracellular calcium in the parathyroid cells, Aldosteronism and Adrenal and Renal endocrine malfunction. Her lungs have been relatively good but she had a Proctocolonectomy from the rotten mucous built up in that organ and Hysterectomy both long before we knew she had CF. She has just had her 4th Pacemaker implanted.
      On the front page of Cystic Fibrosis News Today is a small panel asking when did you get CF? A stupid question as it has always been there. Such a question reinforces the misconception of many that CF is acquired. Better to ask “When were you first diagnosed with CF?”
      CF is a multi organ chameleon of a disability with manifestations in every cell of the body. While lung problems are most common we should not stop there!

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