• Paul met Debbie replied to the topic Diagnosis in the forum Adults​ ​With​ ​Cystic Fibrosis 3 months ago

    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.

    • Paul, this is such an interesting perspective! I’ve actually been doing some research into psychological ownership of disease and/or disability and whether that leads to different outcomes. The timing of your words couldn’t have been more perfect!

      I’ve been involved in two virtual event planning groups (of sorts) and essentially, we just have a bunch of conference calls to brainstorm, plan, and execute the whole darn thing! It’s been a fun way to get involved with the community, although I’m definitely still a novice! I’ll post a link to the Virtual Events CFF page if you’re interested in learning more.

      https://www.cff.org/Get-Involved/Attend-an-Event/Virtual-Events/

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