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    • #15328
      Bailey Vincent
      Keymaster

      Inspirational.

      This is a word that is used a lot in the chronic illness community. Some people hate it and don’t want to be “inspo porn” (for lack of a better term) for others, while some find the encouragement kind and well intended.

      I’ll admit that I’m a bit of both, and truly see both sides of the fence. I wrote about being called “brave” on my Instagram yesterday, and how I feel like I crave the approval of this word from those closest to ne (I truly want my doctors to be like: “Wow. You are so tough”), but also see how placating – and even ableist- it can feel for anyone born with a unique body. Basically… I’m a really confused hypocrite at all times.

      What do YOU think? How does the I word make you feel, and what do you wish others would say instead?

    • #15334
      Tim Blowfield
      Participant

      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 is a Genetically caused disability that does lead to chronic illness. The abnormality caused by the CFTR gene mutation is well recognised as causing salty sweat and thick mucous – the result of the faulty Chloride transport. Less well acknowledged is that that same faulty transport causes intracellular aberrations of electrolytes to balance the high Chloride retained within the cells. Basic chemistry of solutions is that anions and cations are balanced. So if Chloride is raised either other anions (mainly Bicarbonate) needs to be lower and/or Cations (Potassium (K), Sodium (Na) and Calcium (Ca)) need be higher. CF’ers are prone to hypokalaemia (low potassium) almost certainly the reaction to high intracellular K. Less well recognised is the effect of increased Ca on the Parathyroid Gland and bone metabolism. Osteoporosis is common in CF’ers. Many of these Electrolyte caused conditions may take decades to manifest (ie Parathyroid Adenomas) decades till recently most CF’ers unfortunately did not have. We may well see more of these in persons who have had lung transplants and inhaled gene therapy where only the lungs are targeted. Every cell in the body is affected, though some more than others. Fortunately oral corrector drugs, such as Trikafka, are likely to correct the abnormality in every cell – not just the lungs.

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