I'm 13 and i have cystic fibrosis, and its said that i will only live to my early 30's! im scared!?

ok ive had it since i was about 6 months old, and every few years i have quite bad infections. but other than that, i think im fit. i get a B in physical education, i ride horses and i have my own horse, i play hockey,tennis,football, netball, and ice skating. does anybody know the classes for the cystic fibrosis? like A - is the worst. or something like that. and what class do you think im in? i never get wheezy, i only have dry coughs, but i have to take tablets on every meal.

Hi, Danielle.

I'm another CF'er and I celebrated my 40th birthday this summer. Once I made it through the complications at birth from my CF the doctors told my parents I would likely never see my 4th birthday - so I've beat them 10 times over.

There are hundreds of mutations of the CF gene so that results in different levels of severity right from the start. From your description it sounds as if you have one of the less severe forms of it. If you're taking care of yourself and following your medical routine then you should expect many more years of good quality life. I've met a number of people over the years that weren't diagnosed until they were adults. Although the current published expectations are mid-30's remember too that researchers are constantly making advancements in courses of treatment, new meds and potential cures. By the time you reach your 30's there should be many more options available to you and the life expectancy will probably be years out still.

As for me, I will be celebrating my 10th wedding anniversary next month and my 18th anniversary with my employer in November. I went to college - night school - while working both a full time and part time job. I had a double lung transplant 08/26/04 and can do about anything I want to do.

While all of us get scared from time to time remember that everyone has something to deal with that is less than perfect in their lives - yours just happens to be CF. Try to find some humor in it - there really is quite a lot and most of us are very creative...laughter really is one of the best forms of medicine.

If you can't get past feeling scared then you need to talk to your CF team. They can help explain your specific case to you so you're better informed of what you can expect vs. just reading standard information on the internet, etc. And keep in mind that the will to live is one of the strongest powers there is...

Best wishes.

I wish this ? had stayed open longer so I could have answered.
I have a cousin who has CF and he is over 40 and still in relatively good health. He still has a regular job, and he and his wife have 4 kids, NONE of which have it! Report It

I wish this had stayed open longer also. My son is a cf'er, he is only 6 though. Remember, they make huge advances in care every year. Report It

you will live as long as YOU want to. many people defy doctors predictions. take care of yourself, take your meds, and you'll be fine. there might even be a cure for it someday. you never know...

I'm 57 and have diabetes, high blood pressure and am morbidly obese, they say I have maybe 20 more years....like you I am scared but I am going to do everything I can to be happy and help the ones I love be happy. Every person will die at some time, just be all you can be for as long as you can.....Fear dying alone, unhapppy and unaccomplished.

Honey - be well and prove them all wrong. The fact that you are so physically active puts you in a class by yourself. Live life to the best of your ability every day & you will live until fate steps in.

Remember this ..... no one knows when their time is up. Don't dwell on the number because a number is all it is !!

As one who has faced death I can understand your fear. Many people are not ready to die. That is evident when they are confronted with it. Ben Franklin once said 'work like you will live to be one-hundred and pray like you will die tomorrow. Christ alone can take away the sting of death. He alone has conquered it. He went to the cross knowing what would happen, but was prepared.

Consider each second of your life to be one dollar. That means you would get $86,400 a day. Though you cannot save any of it you would get the same amount the next day for the rest of your life. However, after you die God will look at your receipt. If accepting Christ as your Lord and Savior is not on it, God will look for any 'bad' purchases you have made. Then you are in trouble. But if you have accepted Christ you have nothing to fear.

Prepare yourself. Then you will fear no more.

Anyone who says that is mental. I know of several people with cystic fibrosis who are over 40 and a few in their 60s. I am 25 with cystic fibrosis and when i was born they said kids with CF didn't make it to 18... NOW they are saying the median age is 37. There are so many advances in medicine and so many more on their way. There are a TON of therapies now a days. If you want to talk to some other CFrs you can try

http://health.groups.yahoo.com/group/cys...

There are over 500 members there are and most of them have CF.
Anyways don't take stock in people telling you you'll only make it to your early 30s. They are unedgimicated morons. :)