• Rare! We are definitely so. My wife was not found to have CF till she was 67. Is now probably the third oldest in Australia. While she has the common G542X mutation on one Chromosome she has a rare mutation (R75Q) on the other. Many considered the latter not to cause CF but of a checklist of 25 common problems seen with CF Reva showed 20. For a CF person her lungs are reasonable but other so called co-morbilities abound. When diagnosed in 2009 it was said CF persons did not have heart disease largely on the grounds that they were often this and did not absorb fat well thus avoiding a common cause of coronary artery disease. She has cardiomyopathy which we are convinced is the result of abnormal intracellular electrolytes (If Chloride is not pumped out then it will be high inside the cell needing cations Potassium, Calcium and Magnesium to be high to balance it.) This electrolyte inbalance seems to be the cause of Adrenal Gland issues (Addison’s disease and Hypokalaemia), hyperparathyroidism and most recently found hypothyroidism.
    We believe CF is a far more complex problem than just a pulmonary and mucous membrane disease (important as they are). Co-morbidities are too often dismissed as unrelated (but are they?) and why do many CF persons have a long list of drugs that they can’t tolerate?
    Needs more research!
    CF needs be treated by Physicians not just with a good understanding of pulmonary disease but also with a great and broad understanding of general medicine. No easy task but essential.

    • I could not agree more, and wish I could plaster this on the walls of every clinic: “CF needs be treated by Physicians not just with a good understanding of pulmonary disease but also with a great and broad understanding of general medicine.” Here here!

      I think your wife’s story is fascinating and courageous and reassuring, among many other superlatives.

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