Re: A request.. FOR EVERYONE....infection worries

[Guest guest]

Great question michelle. Contamination only occurs from breath

contact, person to person. Bacteria, and the one that we have to worry

about is Cepacia, does not live on objects. Between the book being

sent, no germ will be passed on. i just had this conversation with my

doctor about cepacia, and the shelf life of germs. There is no way

this could be any danger to anyone.

Natalia

24 w CF

> This is a good idea, except... what about contamination?  I hate to

> be the paranoid mother, but I don't even let my kids touch the books

> in the dentist's waiting room.  I just can't see letting my child

> with cf handle something that has been passed around to hundreds of

> other people with cf.  Am I being crazy here?  What is the

> likelihood of germs being transmitted via scrapbook?

> I'm not unusually overprotective, but this seems a little risky to

> me.  What about putting all the same information on a website? 

> Everything could be scanned and put into a pdf file so that it could

> be printed out just as it was written, or viewed online - with zero

> chance of cross-infection.  The http://www.cfparents.org website has

> space.

> Just a thought.

>

> ~

> mommy of 3, 1 with cf

>

>

>

> > That

> > > way we could keep track of it and keep in going all over. 

> Imagine

> > > sitting at home with your family and looking at picture after

> > picture

> > > of CF people all around the world.  And reading their messages,

>

> > > and on and on.  Imagine the possibilities.  We could take it to

> > > clinics, to have people join in.   Each person that has it that

> > moment

> > > could get involved in any way that they like, perhaps collecting

> > some

> > > pictures and pasting them in yourself.  It would give us all a

> week

> > or

> > > two of crafty fun, before mailing the book to its next temporary

> > home.

>

>

>

>

> -------------------------------------------

> The opinions and information exchanged on this list should IN NO WAY

> be construed as medical advice.

>

> PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR

> TREATMENTS.

>

> ------------------------------------

>

>

>

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>

>

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>

>

[Guest guest]

Natalia,

The Cystic Fibrosis Foundation has a webcast archived on their

website at http://www.cff.org that states that germs, including b.

cepacia and pseudomonas a., can live on surfaces for hours. In

fact, germs can live *and multiply* in moist environments. Of

course, a book is usually not moist, but please understand that

contamination is not limited to direct contact.

If germs couldn't live on surfaces, then there would still be toys

in the cf clinic waiting rooms. Also, if germs could only be spread

from breath contact, then hand washing wouldn't be so very important.

My suggestion is that everyone (especially health care professionals

who deal with cf patients) look at the CFF website. The guidelines

they present are brand new, so your doctor may not be aware that

they have been changed recently.

~

> Great question michelle. Contamination only occurs from breath

> contact, person to person. Bacteria, and the one that we have to

worry

> about is Cepacia, does not live on objects. Between the book

being

> sent, no germ will be passed on. i just had this conversation

with my

> doctor about cepacia, and the shelf life of germs. There is no

way

> this could be any danger to anyone.

>

> Natalia

> 24 w CF

[Guest guest]

How about putting a cover around the book (those plastic sheets) and a huge

sign in BOLD " WASH HANDS BEFORE TOUCHING " .

Rosemary in NY with 3 children (13, 11 and 7)

with CF. I have a dog named TOBI and have

coined the phrase " BREATHE DAMMIT "

my new favorite quote is

Any idiot can face a crisis -

it's day to day living that wears you out.

Anton Chekhov

[Guest guest]

I don't know about that... I used to not let the kids play with the toys in

the cf center rooms. Our doc. thought I was nuts. She said that they had

armloads of studies saying that germs and bacterias wouldn't live on hard

surfaces.

The next time we went back all of the rooms had been cleaned out and you

could check out sterilized toys and then they would be removed to be cleaned

when you left. The doc. was chagrinned when she talked to me saying that at

the last ed. day they went to there had been several studies published that

found P.A. could live on hard surfaces for a longer time period than they

thought.

The book is a lovely idea, but I'd rather a cyber book that we could all

feel safe contributing to and then like Bev said have it printed when it is

complete.

Dawn mom of 4, 7 and under, the youngest wcf

Re: Re: A request.. FOR EVERYONE....infection worries

Great question michelle. Contamination only occurs from breath

contact, person to person. Bacteria, and the one that we have to worry

about is Cepacia, does not live on objects. Between the book being

sent, no germ will be passed on. i just had this conversation with my

doctor about cepacia, and the shelf life of germs. There is no way

this could be any danger to anyone.

Natalia

24 w CF

> This is a good idea, except... what about contamination? I hate to

> be the paranoid mother, but I don't even let my kids touch the books

> in the dentist's waiting room. I just can't see letting my child

> with cf handle something that has been passed around to hundreds of

> other people with cf. Am I being crazy here? What is the

> likelihood of germs being transmitted via scrapbook?

> I'm not unusually overprotective, but this seems a little risky to

> me. What about putting all the same information on a website?

> Everything could be scanned and put into a pdf file so that it could

> be printed out just as it was written, or viewed online - with zero

> chance of cross-infection. The http://www.cfparents.org website has

> space.

> Just a thought.

>

> ~

> mommy of 3, 1 with cf

>

>

>

> > That

> > > way we could keep track of it and keep in going all over.

> Imagine

> > > sitting at home with your family and looking at picture after

> > picture

> > > of CF people all around the world. And reading their messages,

>

> > > and on and on. Imagine the possibilities. We could take it to

> > > clinics, to have people join in. Each person that has it that

> > moment

> > > could get involved in any way that they like, perhaps collecting

> > some

> > > pictures and pasting them in yourself. It would give us all a

> week

> > or

> > > two of crafty fun, before mailing the book to its next temporary

> > home.

>

>

>

>

> -------------------------------------------

> The opinions and information exchanged on this list should IN NO WAY

> be construed as medical advice.

>

> PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR

> TREATMENTS.

>

> ------------------------------------

>

>

>

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>

>

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>

>

[Guest guest]

I don't mean to sound paranoid but my opinion is you can't downplay

the seriousness of cepacia and the devastating effect it may/can have

on someone with cf - once you have it, it's too late to wish you or

your child was more careful - like wearing a mask at the hospital,

not playing games with other cf patients (handing game pieces back

and forth) and so on.

> > > That

> > > > way we could keep track of it and keep in going all over.

> > Imagine

> > > > sitting at home with your family and looking at picture after

> > > picture

> > > > of CF people all around the world. And reading their messages,

> >

> > > > and on and on. Imagine the possibilities. We could take it to

> > > > clinics, to have people join in. Each person that has it that

> > > moment

> > > > could get involved in any way that they like, perhaps

collecting

> > > some

> > > > pictures and pasting them in yourself. It would give us all a

> > week

> > > or

> > > > two of crafty fun, before mailing the book to its next

temporary

> > > home.

> >

> >

> >

> >

> > -------------------------------------------

> > The opinions and information exchanged on this list should IN NO

WAY

> > be construed as medical advice.

> >

> > PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR

> > TREATMENTS.

> >

> > ------------------------------------

> >

> >

> >

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> >

> >

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