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Mild CF vs. Severe CF

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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@...

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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...

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