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What age were you when you were diagnosed?
Hey everyone!
Let’s talk about when you were diagnosed with CF.
Do you think your age had anything to do with how quickly you were or were not diagnosed? Do you believe that you were taken seriously on your journey to diagnosis?
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2 Replies
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I was officially diagnosed at about 3 months old, although, I was treated like I had CF at birth. It was assumed so, but I didn’t do the sweat test until I was about 3 months old. During the first three months I spent in the hospital, I know my parents were very vigilant in my care with doctors and nurses. They rotated as my Mom worked during the daytime and my Dad at nighttime.
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My wife was diagnosed aged 67. Is now 82. We suspected CT for nearly 10 years before that as the cause of her episodes of ‘Asthma and shortness of breath. Also severe bowell disease. But when asked Drs would universally reply ‘not possible! You would be dead by now.” Even after diagnosis many dismissed CF as a mis-diagnosis. Recent taking Ivacaftor has been beneficial not just on breathing but on maost of the co=morbidities – Adrenal function and hypokalaemia, Cardiomyopathy, Hyperparathyroidism etc. I suspect that it is also benefiting her vasculitis that has almost caused her to lose a leg from Femoral Artery blockage. We look forward to trying Trikafta when available to her probably about next July. The PBAC is considering it at their March meeting to extend it to the wider range of mutations that it accepted for Ivacaftor at its Nov 2023 meeting. Was put on the PBS list last june.
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