When did you find out the truth about CF?

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serendipity730

New member
Someone posted in the teens forum about CF being fatal. They didn't know it was. I know that I found myself in the same position when I was around 14 or 15. I guess I was surfing the web and found the omnious early 30's median. I remember thinking on my 16th birthday, God what if I have lived half of my life. But all in all, I haven't adjusted for the shortened life span much. I decided not to go to med school, a dream of mine since childhood. All in all, I am happy with that decision. Otherwise, I am just trying to live life to the fullest. So, my question is when did you find out and how?
 
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anonymous

New member
I read a newspaper article when I was about 9 or 10 about this woman who was the first pwcf to give birth to triplets (or twins?) and the last line said,'cf is a genetic disease etc etc and the average age of death is 31' Thats when it first hit me and I started to ask questions...Shamrock, x
 
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timmy

New member
when i was younger i was facinated with the military and i someday wanted to join. When i was about ten someone told me i couldn't cause of cf, makes ya kinda realize
 
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anonymous

New member
I am a mother of a CF child (daughter) and i am very open with her about CF and what it can do to her. She understands how important it is for her to do her treatments and take her medications and to let me know when she is feeling sick. I feel it is so important to let her know so that she will understand what can happen and so that she enjoys her life to the fullest!!! She is only 9 years old and of course there are times when i really need to get on her and remind her to do her vest and she knows that i am only trying to keep her as healthy as possible for as long as we can. I felt very bad for the person on the other forum, i really hope that she goes to her parents or doc for more info.

Kaitsmom<img src="i/expressions/rose.gif" border="0">
 
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thefrogprincess

New member
I've known since I was old enough to understnad that CF is deadly. My parents didn't want me to go through some big traumatic event finding out. I think its cruel to let a kid grow up and not tell them that they could die because of CF. Even as a kid that knowledge can shape their future. Like one poster said he decided not to go to med school even though it was his dream to be a doctor. To all the parents out there, do your kids a favor and be honest with them about CF and what could happen to them because of it.
 
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anonymous

New member
I was about 12 when a Doc told me that CF was going to kill me and I think thats when I realize . my mom a had always told me that I had CF and all the things to go along with it. But when that Doc told me that I think that it just hit me. I think that Doc was in the wrong to tell me that and to this day I try to go to the other Doc at the clinic

Sarah w/cf
 
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tessa55454

New member
I have known as long as I can remember. My parents were very strict, and I have always known that if I didn't do everything that I was suppose to do, I could get sick, and maybe end up in the hospital. Great way to scare a kid right. I knew the hospital meant death. Now, I was really little when I was putting these things together, so obvously I couldn't rational a lot of things, but i did know CF was pretty bad and it could kill me. I didn't exactly know how, but I knew it could. And then somewhere along the line, I overheard or found out somehow that when I was born, back in 1977, the average life span was 7. When I made it to 10, I was so happy to have a two digits in my age.

Tessa 27 w/cf
 
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Dea

New member
I am now 31...almost 32. I have always known about my CF...and even to the extent that I could die at a young age with it. It made me fight harder to live a normal life. I was always a curious child and loved to read...so I was always reading about CF...I would find anything I could about it to read. My parents didnt talk about it much so I found out on my own. I think kids with CF should know what they are up against...dont make it grim for them..but be honest that their body needs help to keep it "healthy". Tell them though that if they take the best care of themselves they can...they will live longer and healthier lives than any person with CF can. There are so many new medicines and so much more research being done. I was born in 1973...there wasnt much hope for me....but here I am. So being born in todays world...the hope is great. Take care to all of those with CF and those with loved ones with CF...
Dea
 
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