I'm new to this site and was hoping to throw some questions around that I'm a little confused about. 1) Most of my reading indicates that a CF patient can live up to age 30; do you think this is with old technology? My son is just 5 and I can't fathom he wouldn't live over 30. 2) Has anyone ever heard of having a Delta F508 and S1235R mutation combination and whether that person definately had CBAVD?Thanks!
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Lost in tranlation
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Hi,There is a lot of controversy over that life expectancy number. The most recent one that I have heard is 33. That is just an average though and it goes up every few years with the improvements in antibiotics and treatments, as well as improvemnts in transplants. That number also includes babies who are not diagnosed until after death. The number is mainly generated in the US by the childern and adults that are seen in CF clinics. many older people with CF are not seen by CF specialists who are associated with CF centers but rather by pulmonary and GI docs. Many people go undiagnosed for a long time. I know a woman in California who is in her mid 60's with CF and her daughter has CF and is in her late 30's. many others in their family have lived long lives wiht CF. She still has her original lungs too. There is a man ans a woman who are both in their 70's with CF. Many people are not even diagnosed with CF until the are adults. oNe woman who used to visit this site often was diagnosed in her 50's! I know (online) many in their 40's with CF. I am not trying to sugar coat the facts, but to let youknow it is ok to have hope. Kids still die of CF but the numbers of little ones who die is decreasing and the number of people living longer is increasing.I hope that this helps!Andreamom of Rachel 5 with CF and a boy on the way
In Canada the life expectancy is 35.9 years old, which is 5.9 years older than it was 3 yrs ago when my daughter was diagnosed. Keep in mind that means 50% live beyond that age, and also that kids born over 30 years ago were given life expectancy of about 10 yrs so they have beat the odds. Try not to get caught up in numbers because there are so many other factors involved.Heather
The Life expectancy number is simply a number that must be assigned to any disease that can take people's lives, as CF can. However, I have always believed that CF is a disease that varies MOST from person to person, and to even think of this number as some type of "sentence" is baseless. The life expectancy of people in the US is what? somewhere in the 70's? Does this mean when people begin to reach this number that they think they are going to drop dead? of course not. Does this mean that people in thier 50's think they "definitely" have 20 or so more years ahead of them? No. The life expectancy number is simply for statistical purposes and textbooks, it has no relevance to the life of a CF person.<b>Text</b>
I can't say what a nice feeling it is to read something positive.I have a 10 month old son with CF and I know that he is lucky to be born in this day and age, but it still doesn't make you feel good reading the statistics and pondering that awful thought of what if.All I ever try to do is be positive and I know that a cure is quite likely in his lifetime.I would like to know how other kids have felt growing up with CF being faced with these awful stats all the time?I really do admire people with CF as I wouldn't have a clue what it would be like to walk a day in their shoes, but I know that there are a lot of really positive role models for my son!Rebekah Mother of Matthew 10months WCF
Hi,I'm 30 with CF....born in 1973 the life was expectancy wasnt even in the teens. I was diagnosed just few weeks after birth, so have known all my life. I want to say that a child born today...has a chance at a wonderful and long life. I am still doing well...I have 2 copies of the delta F508 mutations. I can say I have lived about as normal life as anyone. I am married and have a beautiful daughter who is almost 6. Sure I have run into complications with this disease...but each one has made me more determined to fight harder. Each one of you that have a child with CF...you will have a strong and determined child....if you help them. Dont baby them...treat them as normal as you can...Dont ever look at the bad things about this disease...it will overcome you. You must always think positive....believe me....I know its hard...I live with it everyday of my life. Good luck to all of you! Enjoy your children!Dea
oh, the life expectancy number means nothing to me, personally. it all depends on what cards were i dealt when i got this disease and how do i take care of it. i know that if take good care of it, do all my treatments and all, i can live to see my birthday cake without any candles on it as to not cause a fire in my house. and if i don't take care of CF, then no cake for me <img src="i/expressions/face-icon-small-smile.gif" border="0"> the average life expectancy for a healthy average person is 70-something. some not live to see it, some live way beyond. it's all a matter of what you're given and what you do with it.IMHO.Lois, 21, CF, Israelboys_dont_cry_1982@yahoo.com