• Profile photo of davlyodavlyo
    Member
    #171205302466

    I’m almost 33 and I gave up on dying a long time ago. Meaning, I just decided to LIVE!!! And I plan on being around a long time :) easier said than done, but a long time ago I decided, “What’s the point of living if I am going to spend the entire time worrying?”

    Profile photo of linalina
    Member
    #171205171300

    I know cf comes in different colors and shades, but I’m 42 and still going. I don’t think about dying, just how best to care for myself each and every day. Inch by inch, life’s a cinch, yard by yard, life is hard! One day at a time.

    Profile photo of NaomiNaomi
    Member
    #171205271638

    00transam:

    I really wish more people like you, over 35, would post here. These teens need to hear and understand out stories.

    Bill

    Profile photo of quagimoto466quagimoto466
    Member
    #171205430216

    I am 40 right now, I have lived past every life expectancy number before it gets moved up. To be honest I think more about staying alive, exercise REGULARLY enjoy all the new modern meds and your chances or beating 45 are better than any time before now. I also want every day possible with my wife and alive in general. I am active and loving it,,,,,GOOD LUCK TO YOU.

    Profile photo of Daberu622Daberu622
    Member
    #171205430180

    Wow you are an encouragement Bill!! im 20, and want to live as long as i can with my new husband and hopefully future children! give me hope i can make it past that 45 year average that keeps popping up! 😀

    Profile photo of cabralesmomcabralesmom
    Member
    #171205170503

    I really don’t want to think about dieing….

    Profile photo of cabralesmomcabralesmom
    Member
    #171205301865

    I really don’t want to think about dieing….

    Profile photo of JoannamcJoannamc
    Member
    #171205165383

    i dont no but that is a scary thought

    Profile photo of JoannamcJoannamc
    Member
    #171205297314

    i dont no but that is a scary thought

    Profile photo of LaurelLaurel
    Member
    #171205161395

    Could you send me that message to about how CFers die. I’m curious as well.

    Profile photo of LaurelLaurel
    Member
    #171205293787

    Could you send me that message to about how CFers die. I’m curious as well.

    Profile photo of LaurelLaurel
    Member
    #171205425035

    Could you send me that message to about how CFers die. I’m curious as well.

    Profile photo of NaomiNaomi
    Member
    #171205161329

    mea6195 and others:

    I was born in January of 1940. At that time there were two names for CF, Celiac Syndrome (a disease of the pancrease) and in the late 1930’s it was given the name Cystic Fibrosis. Cystic Fibrosis, at that time, was “caused by a deficiency of Vitamin A”. There were NO Doctors who specialised in CF, there were no CF Clinics, there wasn’t any CFF, only sickley, skinny, mal nurished kids waiting to die.

    I want you to imagine that when you were dx at age 5 there was no CF Doctors, no CF Center, no Tobi, no Pulmizime, no enzymes, no vest, and no hyper sailine and especially NO LUNG TRANSPLANTS. Now think about surviving, that way, to your 47. There is penicillen but nothing else. Certainly no lung treatments.

    You say “yea but you weren’t dx until you were 47” like I contracted CF at 47 years of age. WRONG!! I was born with it, same as you. It is no small miracle that those of us born before 1970 survived. I, like others, didn’t wait until we were adults to start to show symptoms, we had symptoms all of our lives.

    If it wasn’t for the people who raised money, starting in the 1960’s, there would not be the results of years of research that you now benefit from now. CF didn’t begin on the day that you were born.

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