Anyone noticed?

[ladybug]

Hello. So, has anyone noticed that its virtually impossible to find books on CF or written by CFers or family members in places like B & N and Borders (let alone the public LIBRARY)?

I often swing by the health section to see if there is something I can sit down with while I sip my coffee, and to my surprise, in all the states I've lived in and been to, not ONE has ever had a book on CF or by a CFer or family member, etc! I go onto the websites and find they CARRY such books, but you have to special order them or get them online. Does anyone else find this annoying? There are like a gazillion books on and written by diabetics, cancers of all kinds, pain disorders, mental disorders, etc (not that they aren't just as worthy of publication).... yet, I've never found a bookstore to stock on their shelves any books on CF! Ugh!

I'm just curious if anyone else has had this experience, or am I just looking in the dozen or so major chains' stores that just happen to not carry them.... I just find it kind of annoying.... I mean, how are others supposed to LEARN about CF if they can't even find info about it at their local bookstore?!?

Sorry, just a rant. <img src="i/expressions/face-icon-small-blush.gif" border="0">

 

[dyza]

Hi Sonia,<br>
Do you have  Waterstones book stores near you, not sure if
they are only a U.K store, there again I dont know where you are.
But they have  books on by CFers, try the reaaly big store on
Sauchiehall st in Glasgow, if you can

 

[wallflower]

I guess this doesn't surprise me too much.

When people find out I have cf, they don't think its that big of a deal, cause I don't look sick. I just have a cough - big deal.

This makes me think on how we all want more attention brought to the disease (especially adults for more government programs), but I know that I myself am always the first one to cover up my disease to others. I can't count how many times I get asked about my cold. I usually play along, cause it seems so much easier - especially for someone I won't see again. Maybe instead, we need to start clarifing ourselves better. "No, I don't have a cold, I have CF." You know those people are going to run to the bookstore or google to see what danger they just put themselves into <img src="i/expressions/face-icon-small-smile.gif" border="0">

Part of why I don't, is also the fact that's it hard to find updated information, so then people think I'm on my deathbed.

When you think that there are on average 30,000 cfers, and for every one of those, at least 5 people know about cf through them - you got to wonder why more people don't know about cf. Is there any data on the number of carriers? People tend to read less about diseases that dont directly affect them - maybe more would if they know about the carrier gene.

 

[ladybug]

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

Hi Sonia,

Do you have  Waterstones book stores near you, not sure if
they are only a U.K store, there again I dont know where you are.
But they have  books on by CFers, try the reaaly big store on
Sauchiehall st in Glasgow, if you can</end quote></div>

Thanks, dyza... I'm in the U.S.... in Nevada actually. The "big" stores here are usually Barnes and Noble and Borders or Waldenbooks or stuff like that. I've just never seen them in the "major" chains here in the U.S., and it really angers me. Why don't they stock them?!?! Maybe I'll write a letter. I know, for me, when I go to the health section and see a book on a disease I've not heard of or hear very little of, I usually want to pick it up and learn more. Just wish they had stuff on CF for the others out there that are like myself.

 

[skh]

Another reason for Allie to write that book!

 

[Emily65Roses]

Barb, I think there's a carrier 1 in every 32 people. Something like that. So it's not really a minute number.

As for the original question, yes, and I hate that! Everytime I go into B&N, I look in the health section, and look carefully. And everytime, I find nothing. Not even one g*dd*mn book. So irritating. WHAT'S WRONG WITH EDUCATING PEOPLE!!!!!!!! Rarrrrrrr.

(But on that topic, Mike's mom Louise works in our public library. When Mike came home announcing his new girlfriend had CF, first thing she did was bring home some books from work about it so the whole family could read. So I know our library has at least one. Course there should be at least half a dozen. How many books are there about cancers, or AIDS? We should demand equal shelf space. Hahahaha.)

 

[anonymous]

Our local library has Alex the life of a child. Robin's book(a diary of a young woman with CF. EXCELLENT read even though its from the 80s!), A guide to cystic fibrosis and a copy of Cystuc Fibrosis: a guide of patients and family.

I was really impressed that our library had all of those. COnsidering its a small town library

 

[JazzysMom]

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

Our local library has Alex the life of a child. Robin's book(a diary of a young woman with CF. EXCELLENT read even though its from the 80s!), A guide to cystic fibrosis and a copy of Cystuc Fibrosis: a guide of patients and family.



I was really impressed that our library had all of those. COnsidering its a small town library</end quote></div>



Funny that you say this because my hometown library carries books, but the larger ones dont. I guess its possible because of people knowing me in my hometown which is much, much smaller then where I live now. Either way it varies! I also know that local library can get them from other libraries as a loan!