Guest guest Posted January 2, 2004 Report Share Posted January 2, 2004 Hi, those discussions about " mild " and " severe " CF have caused a lot of trouble on other lists, it seems to be a touchy subject. Well, it's not much of a problem to me though. You " just " have to distinguish between statistical data and the individual patient. If the median life expectancy of CF patients with pancreas insufficiency is say 26 years and that of CF patients with a functioning pancreas is say 46 years (I don't have the exact numbers handy, but it should be a good guess) then I can see a difference. And how else could you describe that difference than to talk about " milder CF " ? And since 46 years are still 30 years below the life expectancy of " normal " people nobody can deny that even " milder CF " is a serious and lethal disease. Plus you have always have to keep in mind that these are statistical data. Of course people with 2 copies of the dF508 mutation can live beyond 70, if they have good docs, some great modifier genes and luck. And patients with a mild mutation (e.g. R117H or A554E) can die from CF in their teens. Furtheron I understand Hal's view, that your doc might not take your problems seriously if you are labeled as a mild case. But you can also argue the other way round that the mild cases receive a better treatment because " it's worth it " while the severe cases are neglected because " they'll die anyway " . We have heard and seen everything on the lists. Outstanding treatment from outstanding docs and malpractice from dumb docs. In the end I always come to the conclusion that no matter what course of the disease you or your child are experiencing, the CF patients have to be their own advocates because CF is a comparable rare disease and science moves on so fast that docs can't know everything. And finally one last thought about the importance of knowing one's mutations. It is common sense that gender, height and weight of a baby don't tell anything about it's future life. And still whenever a baby is born people ask " is it a boy or a girl? " , " how tall? " , " how much does he/she weig h " ? And what would you think about docs and parents who go like " I don't care, it's worthless to mention it " ? Telling the mutation and knowing the mutation to me is a sign that someone cares. It might be useless info, but since we know close to nothing about CF (compared to some other diseases) I treasure every single piece of information. Peace Torsten, dad of Fiona 6wcf and Sebastian 6months wocf e-mail: torstenkrafft@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 2, 2004 Report Share Posted January 2, 2004 Torsten... Thankyou.I think that was worded perfectly:):)I remember hoping for a " mild " case for my son...you addressed that issue so nicely.I'm glad thaat the old saying of " time heals all wounds " , really is somewhat true.Instead of agonizing over what might happen, with time I've learned to deal with what DOES happen.It's hard for people like me with the as i refer to it, " black and white " personality, but it is what it is. patty, mom to tyler,8 wcf and 2 wocf > Hi, > > those discussions about " mild " and " severe " CF have caused a lot of trouble > on other lists, it seems to be a touchy subject. > > Well, it's not much of a problem to me though. You " just " have to > distinguish between statistical data and the individual patient. If the > median life expectancy of CF patients with pancreas insufficiency is say 26 > years and that of CF patients with a functioning pancreas is say 46 years (I > don't have the exact numbers handy, but it should be a good guess) then I > can see a difference. And how else could you describe that difference than > to talk about " milder CF " ? And since 46 years are still 30 years below the > life expectancy of " normal " people nobody can deny that even " milder CF " is > a serious and lethal disease. Plus you have always have to keep in mind that > these are statistical data. Of course people with 2 copies of the dF508 > mutation can live beyond 70, if they have good docs, some great modifier > genes and luck. And patients with a mild mutation (e.g. R117H or A554E) can > die from CF in their teens. > > Furtheron I understand Hal's view, that your doc might not take your > problems seriously if you are labeled as a mild case. But you can also argue > the other way round that the mild cases receive a better treatment because > " it's worth it " while the severe cases are neglected because " they'll die > anyway " . We have heard and seen everything on the lists. Outstanding > treatment from outstanding docs and malpractice from dumb docs. In the end I > always come to the conclusion that no matter what course of the disease you > or your child are experiencing, the CF patients have to be their own > advocates because CF is a comparable rare disease and science moves on so > fast that docs can't know everything. > > And finally one last thought about the importance of knowing one's > mutations. It is common sense that gender, height and weight of a baby don't > tell anything about it's future life. And still whenever a baby is born > people ask " is it a boy or a girl? " , " how tall? " , " how much does he/she weig > h " ? And what would you think about docs and parents who go like " I don't > care, it's worthless to mention it " ? Telling the mutation and knowing the > mutation to me is a sign that someone cares. It might be useless info, but > since we know close to nothing about CF (compared to some other diseases) I > treasure every single piece of information. > > > Peace > Torsten, dad of Fiona 6wcf and Sebastian 6months wocf > e-mail: torstenkrafft@w... Quote Link to comment Share on other sites More sharing options...
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