A dictionary of CF words and phrases.

[PeterC]

I could not help but notice that a lot of the questions that get posted here have to do with everyday issues faced by family members and people with CF.

Do you think it would be a good idea to compile a list of definitions of words and phrases commonly used in the discussion and treatment of CF and post it somewhere to make it easier for people unfamiliar with such things to become familiar?

It would be sort of a dictionary that listed and explained things like what a certain drug is for and it might also have a brief summery of potential side effects, or what a particular bug is and the common types of treatments for it. It could also contain words, phrases and code words that are commonly used by Doctors and other CF professionals when discussing a particular condition or problem.

My idea is really all about creating easy access to the culture of CF that we all live in, in order to enable people that don't quite understand something, to find their way more easily.

I know that I have left a clinic visit more than once scratching my head and thinking to myself, "now what was that all about"? It often seems like there is not enough time to ask all the questions I have about my treatment until sometime down the road, when it may be a bit late. I may even be a little hesitant to ask a question thinking that the Doctor is too busy at the moment. The typical quick clinic visit has left me with my head spinning at times.

The idea is based on a collection of definitions of words and phrases that was put together several years ago to explain internet and computer terminology. I found it quite helpful.

So what do you think? I am not sure how it would all work or where it could be compiled and accessed. Thats why I need your imput.

Sincerely:
PeterC
57 m/cf

 

[CowTown]

Sure, that's like a good idea for those who are just recently getting familiar with the CF world.

I know for myself that is one of the many things I really like about this site and everyone on it is that we all understand the crazy CF terminolgy without having to explain. You don't have to slow your threads down by explaining, everyone (a lot of people anyway) gets what you're talking about immediately. I love that! When you're talking to Joe Smoe about medical stuff, they think you should go to medical school or something. No, it's just that we've been immersed in this talk our whole lives. I would imagine someone just getting familiar with it all would get lost often, or ask a lot of questions.

 

[Faust]

I would like to enter my submission: "CF oil booty blow out".


That it all.


Carry on.

 

[Jane]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>SeanDavis</b></i>

I would like to enter my submission: "CF oil booty blow out".





That it all.





Carry on.</end quote></div>

Maybe a video montage to go along with this?

 

[Jane]

Its a good idea, like a master source. I have learned so much reading everyone else's posts recently. Although I'm familiar with the issues my boy have had, there is a lot of stuff that other people talk about that I needed to look up.

 

[anonymous]

I think it's a really really good idea. And we leave it somewhere at the top so people can always see it... Just simple stuff like common med names, and I see a lot of people tend to not understand what rx, dx, and tx mean.

 

[anonymous]

Ugh, that was me, I'm not at my house, so I'm not signed in.,
-Emily (Emily65Roses)

 

[anonymous]

I think it would be a good idea too. Even though I've dealt with CF for the last 9 years - until I started going to these forums (3 weeks ago or so) there is a lot of things I never knew about. My son hasn't had alot of problems yet - but I feel by reading up on these forums at least I might be ready to handle things if they come our way. There is alot the doctors don't tell you - and you have to learn on your own!

Thanks!
Mother of 9yr old boy wcf

 

[CowTown]

I have one thought, maybe it would be best put together on say PeterC's blog or something. That way you, Peter, can go back and edit/add whatever new terms there might be. For myself, somethign like this would be annoying to go to a thread where people can post, ask questions, plug the thing up with other things when all someone might want to find is one term. You could have all the terms listed on your blog and keep it clean with only the mess of posters that could accumulate in the message link.

Well....you have a lot of work to do Peter! Best get crackin. <img src="i/expressions/face-icon-small-smile.gif" border="0">
Just kidding.

 

[CowTown]

And then a note on the main forum to go to Peter C's blog for terminology. Just a thought.

 

[anonymous]

Or....there could be one new blog created/named CF Terminology (CF Terms or Words), instead of someone's personal blog. Whoever would have control of that one blog would be the one to edit/add and not have anything else on it. So it would a self sufficient blog.

<img src="i/expressions/face-icon-small-happy.gif" border="0">

 

[anonymous]

Wooops, that was me......

Kelly, My Newfy

 

[julie]

I think it's a great idea Peter. Maybe the moderators can-with our assistance- post something like that onto a word document that can be viewed by newbies at any time, but that only the moderators can edit. Maybe not part of the fourms so it disappears down on the list, but something that is on the side at all times. Maybe title it something catchy like-New to CF... or something like that.

Great idea, I can help compile something with you if you like. I think as many people who can assist with ideas, especially those who have been new to CF recently.

 

[Scarlett81]

That's a good idea. And FYi- The Cf Foundation's website has a sort of phrase dictionary also.
But I think it'd be nice to have one here too.

 

[65rosessamurai]

I actually suggested that idea months ago!!
I think I made a copy somewhere, though.
there were a lot of acronyms I had not seen before when I first got here, and started noticing other's after me were not familiar as well.
As for the "Booty Blowout"--no video is necessary; for one thing, all blowouts are created equally!!!
yes, FAQ would be a good place to find such acronyms, etc.

 

[Imogene]

<br>
There should be a new section of blogs...for general info<br>
CF Terms<br>
Diet<br>
Supplements<br>
<br>
People can ad to these from all angles...kind of like the
categories.<br>
The CF terms one can have a list of people who would be interviewed
for HS students.<br>
Probably we need MYNEWFY to organize  the CF Terms Blog in her
wonderful style.<br>
I'll let Bill know.<br>
Jeanne<br>
<br>

 

[CowTown]

Thanks. I'd be happy to put together the CF terms in a blog. Just let me know how you want me to proceed. I don't have a long list off the tip of my tongue for terms though. So maybe people can write in with thier lists and definitions and I'll just assemble it? Is that what you were thinking Jeanne?

 

[PeterC]

julie

I think you have a great idea!! I would like it to be easily accessible to anyone visiting the site, along the top or at the side as you suggested, instead of being located on a blog which can easily get lost in the shuffle.

Once we figure out who will be in charge of puting it together, ( I am unavailable at this time because of other obligations ) maybe we can have a way that anyone who would like to include information can easily submit something, or maybe it could be set up a little like www.wikipedia.org, where anyone can submit and or edit information. Then it is reviewed by their adminitrators before it is posted.

What do you think, and what is needed to move this along to the next step?

Thanks everone for all the great feedback!! You too Sean....?

PeterC

 

[julie]

Peter and others, I'm starting to work on this now... great idea by the way.

Looking for some feedback, input as to what everyone thinks should be included in this dictionary/interactive FAQ.

I'm trying to think back to when I was new to CF and all the things that I just didn't understand. I'm not making too much progress though.

I'll be reviewing some of the posts from parents of children who just got diagnosed, CFers who just got diagnosed, other relatives who are new to the CF world...seeing what main questions seem to be repeated all the time.

I would love input from everyone on the site as to what they think should be included and I'll put it there!

Thanks in advance for the help everyone!