This topic contains 1 reply, has 2 voices, and was last updated by  Paul met Debbie 1 month ago.

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  • #13795
     Jenny Livingston 
    Keymaster

    I recently collaborated with several people in the CF community to plan for a virtual event and as we got to know each other, I was fascinated by some of the diagnosis stories I heard!

    Since both my older sisters also have CF, I was diagnosed at birth. But I’ve learned that so many people were diagnosed later in life (one woman I know was diagnosed at age 60!) or had to endure years of health issues and uncertainty until they were finally given a diagnosis of CF.

    I’d love to hear how/when you or your loved one were diagnosed. 

  • #13807
     Paul met Debbie 
    Participant

    btw How does it work, planning for a virtual event? I am curious about it!

    I was diagnosed at the age of 4, it was 1967 (sweattest) and in that time an earlier reliable diagnosis was not possible, the cf gene was not yet known then; however, cf was already known in my family so the chance of me having cf was 25%. I had no real health issues at that time. After diagnosis I was put on enzyme therapy, which in the sixties was the only specific medication available for cf as far as I know, as well as a low-fat diet which I did not like. How things have changed over the years!

    Fortunately, I was never told by my parents about cf until much later in life, so I never got to identify with it. When they finally told me, it felt as if this did not really apply to me personally, so I never believed the statistics etc either.

    (slightly sidetracking:) Even at this time in life, when I think of myself, I don’t think about “me” “having” “cf”. For me, it is just about taking the meds, doing the therapies, accepting the limitations and get on with it. I never think that this or that is because of cf. Things just are. It’s not a story in my mind and I hardly think of cf as such (not even when typing these words). We all have to take food and water and air and keep moving, to not feel hungry or thirsty or else die within days or even minutes, humans all are that fragile species. And for me the meds and the therapy are like that, nothing special just actions to maintain my body in the way it wants to be maintained. I never compare and never complain. I comply. I want from life what it is willing to provide, and basically, I don’t mind what happens (but mind you: I DO care, am grateful and love life).

    May grace be with you.

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