Project People

[Purplelungs]

I feel like being nice today. So here goes.
Look at the very first page on the site. On that site there is a link....its called Cystic Fibrosis information...you will find everything you need to know there.....now what that hard? ok good Now if you need something more specific than thats in that link, come back and ask...I can be very rude here but I wont be.

 

[anonymous]

I think this is a message to the students who come to the board looking for answers for their school projects.

That's my assumption, at least!

 

[Purplelungs]

Yes its to the school project people who come here wanting us to answer questions for them. If you go to cysticfibrosis.com the very first page that comes up there is alot of links you can go to...one of which is a page dedicated on information to CF.

 

[S]

sometimes their questions are for firsthand accounts...is it really that big of a deal. if you see something that looks like it's about a project then don't click on it, or if you click on it just read the first line and go back...there is something called "free will". all the people looking for info on cf will get from this post is that we are a bunch of whiners with bad attitudes, not a good impression.

 

[Emily65Roses]

If someone reads this post and gets from it that all CFers are whiners with a bad attitude... then whoever is reading is presumptious and ignorant.

 

[Purplelungs]

Actually I wasnt whining. I was trying to help. To many times people come actually asking us what cf is, when you have to go through a page that has info on cf before you get to the forums. I dont mind helping people with school projects. Heck I have helped so many I cant keep count. I have given my account of how cf affects me, my relationships, what medications i take, etc.... Also sometimes people ask their quesitons on other threads, sometimes not even pretaining to what the original poster started out with. I really like helping people, thats why I told them where to find information. Its just that after so many times of helping those who want an easy A i get tired of it....yes I was a nice one to many times and told them what cf was via email...no thank you, i didnt mind I did it because it helps spread awareness.....but its so much work, its like I have done essay after essay. Its just easier to help someone when they have a specifi question, like how much do your meds cost, for a personal account how many meds do you take or how much time out of your day does treatments take, etc. If they want a first hand account they can ask that. But all i have seen being asked lately is "what is cf?" that is so general and easy to answer in the place I told them to look. As a matter of fact I should put the link up. I wasnt trying to sound whiny...I was just trying to help with out giving them an easy way out.
Amanda

 

[Purplelungs]

Heres the link for those doing school projects. This will give you all the general info you need. If you notice the grid above that has diabetes, respriatory, symptoms, pancrease, etc...if you click on those it shows how CF affects those aspects or causes those problems.
http://cysticfibrosis.com/info/index.html

 

[timmy]

i havn't seen many project kids lately, but i can see how u can get tired of the same questions over and over. i agree with amanda

 

[Mockingbird]

<blockquote>Quote<br><hr><i>Originally posted by: <b>S</b></i><br>sometimes their questions are for firsthand accounts...is it really that big of a deal. if you see something that looks like it's about a project then don't click on it, or if you click on it just read the first line and go back...there is something called "free will". all the people looking for info on cf will get from this post is that we are a bunch of whiners with bad attitudes, not a good impression.<hr></blockquote>

You weren't here at the time, but there was a point where we just got sick of people coming onto this site without doing any research whatsoever and just wanting an easy A. So, it is kind of a big deal. It's disrespectful to everyone here when people do that. i'd rather have people think that we're a bunch of whiners with bad attitudes rather than a bunch of medical cases they can just use and throw away. We're people, too, and we deserve to be treated like it. Purple Lungs is completely justified, so stop being so self-righteous.

Jarod
22 w/cf

 

[Emily65Roses]

I agree. And if you notice... when people are looking for firsthand accounts, or have specific questions as opposed to the vague and general junk, we're much more welcoming.

When we get a question like "What is CF?" Or "How does it affect your everyday life?" there's no real way to answer those without going on for 100 pages. And it's not our job to write the essays for them.

Jarod is right. We're not here for them to use when they want, then not thank us, and forget about us altogether. The people that come back and thank us, who show a real interest in the subject, if you'd notice, get much warmer responses. And for good reason.

 

[anonymous]

If you look, just as emily has said you will see that people posting specific questions get their posts answered. but those who state "what is CF excactly?" (see the post in the teens section from this morning) ought to do us the courtsey of looking around a bit first. It is very ignorant to think you can get firsthand examples from just reading general info on cf you are right on that one Mary, but 99% of the people don't ask "firsthand example" questions.

But here's the thing, this is "our" site (thank you to the administrators) and more often than not we pull together like a big family here. So, I don't want my family on display for people to just look at and poke and touch and use and abuse. And that is what it feels like when people come and say "what is CF" "can you tell me about CF". What they need to do is a bit of research, which takes about 2 minutes on the computer these days (which they ovbiously have access to) then come back with questions such as... What is a nebulizer treatment? How long do treatments take? Could someone explain lung functions to me? what does _____ mean? What exactly is a sweat test? So if CF is genetic, how is the probability of having CF figured? Is there more than one way to test for CF? For those who have CF, does your daily routine differ that much from people you know without CF and if so, can you think of anything specific? I mean really, it's not that difficult to think of even just one question. Then it gets the whole process started and I am sure a person can come up with more. Just my thoughts though.


Julie (wife to Mark 24 w/CF)

 

[NoDayButToday]

What irks me almost as much as the vague, broad question posts are some of the answers given. Just a few days ago someone asked about CF on the teen boards, and someone said if you do your treatments, CF is "Sweet" and no big deal. That answer is not factually correct- if CF was 100% manageable, people woudn't die from it, now would they. What if the originaly question poster came back, saw she had one answer and never returned to see me (or I thin Emily died too) discredit the initial answer?

 

[Mockingbird]

<blockquote>Quote<br><hr><i>Originally posted by: <b>Kiwilady</b></i><br>Hello everyone,

I haven't been a member for that long, so now understand what the project people would like from us!! On the introductory CF homepage it gives a welcome to this site {1st paragraph} and clearly states you are able to speak with other people about CF-----visit our forums..... If those regular viewers take offence to any enquiries being asked, they could try to ignore the questions and allow those who want to make a contribution to do so. Now I guess I'll be in the firing line for that suggestion or should I say solution.

Cheers Eileen. <img src="i/expressions/face-icon-small-smile.gif" border="0"><img src="i/expressions/sun.gif" border="0"><hr></blockquote>

I won't put you in the firing line. =-) Here's the thing, With any website, with any topic, there is always a FAQ section. It's common curteousy to look through that, and get answers to the commonly asked questions, before you go spewing them out all over the place. =-) In my opinion, anyone who doesn't take the time, who doesn't give the curteousy of finding some basic information on their own, deserves to catch a little heat. =-)

Jarod
22 w/cf

 

[Mockingbird]

Oh, and I'm not talking about the forum help FAQ topic, I know there isn't any info on there. I'm talking about the FAQ on the main site. =-) Just wanted to get that out before anyone called me stupid. =-)

 

[IG]

I have to say that I agree with y'all, I'm more than willing to help anybody if they want it, even other Cystics who want to talk about transplant... but sometimes it's stressing. I've had people IM who've had projects due THAT day, and they need to speak with me immediately. Well, whoops, you're out of luck sweetie because I have class in 5 minutes. It's annoying really, especially since they want to know about this disease and it takes a while to explain it, and I'm not to good with explaining it in the first place. Do a little homework first, besides people can be wrong. [even myself] ::gaspsshockshorrors:: yes! I've been wrong before <img src="i/expressions/face-icon-small-happy.gif" border="0"> and I probably will be in the future, oh well c'est la vie. I see purple lungs point and a lot of you guys. We're here to help, but not to do the whole project for you. <img src="i/expressions/face-icon-small-smile.gif" border="0">