davlyoMemberOctober 17, 2012 at 6:15 am #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?”linaMemberOctober 16, 2012 at 9:45 pm #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.NaomiMemberOctober 16, 2012 at 5:59 pm #171205271638
I really wish more people like you, over 35, would post here. These teens need to hear and understand out stories.
Billquagimoto466MemberOctober 16, 2012 at 12:47 am #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.Daberu622MemberOctober 13, 2012 at 6:15 pm #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! 😀AnomieMemberFebruary 17, 2012 at 11:03 pm #171205165390AnomieMemberFebruary 17, 2012 at 11:03 pm #171205297321rubiecakez642MemberFebruary 17, 2012 at 9:33 pm #171205165383
i dont no but that is a scary thoughtrubiecakez642MemberFebruary 17, 2012 at 9:33 pm #171205297314
i dont no but that is a scary thoughtDecember 1, 2011 at 11:38 pm #171205161395
Could you send me that message to about how CFers die. I’m curious as well.December 1, 2011 at 11:38 pm #171205293787
Could you send me that message to about how CFers die. I’m curious as well.December 1, 2011 at 11:38 pm #171205425035
Could you send me that message to about how CFers die. I’m curious as well.PrinterParticipantNovember 30, 2011 at 3:32 pm #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.
76 year old male with CF. Mutations Delta F508 & V562I; A1006E, 5T/12. MAC, 100% PI, Diagnosed at age 47 with first known symptoms at age 3.
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