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Posted By : Zee - 8/2/2004 5:09 AM
hello everyone

my name is Zee and i am 16 years old. my younger cousin justin was born with CF 14 years ago, soon to be 15. we live in michigan and he goes to be treated at Childrens Hospital in Detriot. the hospital and staff there do all they can, but cant really deal with a CF patient well....they've just never had to treat someone like justin. they do theyre best though and thats what counts. lately justin has been very depressed and down. his friends know he has CF but they dont know how bad. i looked at the site and found a few places to take him to meet with other kids like him, but it seems like too few places are around.i think if he meets kids his age that have what he has he wont feel so alone. the doctors he sees dont know anything new or how to treat him very well. like i said they are doing they're best,but they arent equiped to treat his severe case. if anyone out there knows doctors or specialists i can email or get in touch with, please help me. thank you all
 
~*Angelic_Zee*~

Posted By : Citty - 8/15/2004 12:41 AM
If you go to the cf website. www.cff.org, they have e-mail address of where you can talk to doctors and nurses and all sorts of people :-)

Phoenix Children's Hospital (which is not just in Phoenix) also deals with many CF patients. You can do a search on google, to see what their website might be, and see if they have a location close to you that you can switch doctor's too. :-)

It's not a bad idea to have him talk to other kids his own age or even younger or older, and find out how they deal with things, but also please keep in mind, that we can also unintentionally spread things to each other, such as B-cepacia(sp) and others, so as uncomfortable as it is, they may need to wear masks when speaking in person.

They used to have a Cystic Fibrosis summer camp, but then because of the potential to spread our "friends" to each other, they canceled it. It broke everyone's hearts....

If you ever need to talk though, feel free to e-mail me at cittycrochet@hotmail.com

Posted By : Zee - 8/21/2004 12:37 AM

hey citty....yeah those sites helped but ur email isnt working and i would like ur AIM name...if u would be ever so kind...

 

 

Zee


Posted By : Citty - 8/21/2004 10:36 AM
That's because I goofed and left a letter out heehee, sorry.
cittyscrochet@hotmail.com. If you click on it on this site it won't work either. Don't know why. but manually typed in will :-)

My Aim is citty purr ing

I think also if you click on the aim character next to my name that it will add me as your buddy

yahoo is cuddlycitten9 :-)

Look forward to hearing from you :-)

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