Calling ALL Forum Users!!!

julie

New member
Peter and some others had suggested an interactive FAQ and definitions for this website... So now we are going to make that happen.

I really need some input from all members/users of this form to shed light on what you think should be included.

So far, some definitions/questions are:
Sweat test
Blood/mutation test
Mickey Tube
GERD
CFRD
Why do women have fertility complications?
Why do men have fertility complications?
How many CF mutations are currently known?
What is a CF mutation?
If there is no history of CF in my family, how can my baby/child have CF?
What causes CF?
What are CF probabilities?
What is a carrier of a CF mutation?
What body parts does CF affect?
Does CF affect everybody the same?
What are some CF information resources?
What is the average lifespan?


I am hoping to add hundreds of others. I am thinking back to the time when CF was brand new to me and all the questions I had, things I didn't understand, definitions frequently used that I had no idea what people were talking about and thusfar, this is all I can think of, but will keep adding to my list.

I am asking and hoping that everone on the site might be able to help out and give some additional ideas... it would be most helpful and very useful to our newest members/lurkers and those of us still learning along the way (myself included)

Thanks to everyone in advance
 
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luke

Guest
Julie,

there always seems to be a lot of questions about meds, maybe add a section to describe the common drugs and usage.
 
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luke

Guest
Julie,

somehow I posted twice, so since I am editing I will add a how to clean nebs to my suggestions
 

anonymous

New member
Here is a link to something that might be useful as far as common CF meds:
<a target=_blank class=ftalternatingbarlinklarge href="http://xpedio02.childrenshc.org/stellent/groups/public/@Manuals/@PFS/@Med/documents/PolicyReferenceProcedure/053542.pdf
">http://xpedio02.childrenshc.or...eProcedure/053542.pdf
</a>
CFF recommended order for treatments?

This is a great idea!
 

julie

New member
Thanks for that link, I know a bit about CF but I am still not a walking dictionary/encyclopedia for it <img src="i/expressions/face-icon-small-smile.gif" border="0"> and am not too familiar with meds other than what my husband takes. This link will help me put this stuff together.

Thanks,
 

anonymous

New member
Julie,

These look good. A few that came to mind were: signs and syptoms of CF, latest research/gene therapy updates, common treatments and medications for CF patients...I'll keep brainstorming.

Carey
 

eli

New member
A question i always used to ask was.* BUGS*, how do they catch them, why, what sorts of bugs can cf'ers catch, how seriouse,how do they affect cf'ers and how are they treated.

Sorry if i'm repeating myself, i'm tired and its time for bed.

Good luck, Julie.
 

Ratatosk

Administrator
Staff member
How 'bout CF and school -- I know some schools allow kids to carry their enzymes, others require them to go to the school nurse, office, etc. Maybe info on a formulating ____ (whatever the document is called) plan regarding bathroom breaks, water, absences..... L
 
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