looking for a friend with cf

Hello Bill and welcome!

You sound like a very busy young man!  Where is Ursinus college?

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Sandra

Be who you are and say what you feel, because those who mind don't matter and those who matter don't mind. ~Dr. Seuss

hi, im not in america im in australia and also 18.. do you have aim if so PM me your address? I too would like to have a chat

Hello Bill.  I was born and raised in PA. (25 years) in a town called Latrobe (home of Arnold Palmer and Mr. Rogers and the first pro football team/game) it is about 40 miles from Pittsburgh. 

My youngest child has CF.  He is doing really well, was diagnosed last August at the age of 10 (a month away from turning 11).  Our biggest concern is his weight right now.  Hopefully we can start to get him on the growth chart.  After having a sleep study that he failed miserablely last winter, he had his tonsils and adnoids out in early Jan. He can breathe so much better now and sleeps well, although I thought he would start to put weight on.  He is on a low dosage of creon and takes adeks.

Take care.

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Sandra

Be who you are and say what you feel, because those who mind don't matter and those who matter don't mind. ~Dr. Seuss

wow. I dont want to imagine what life must have been like living with CF for 14 years and not knowing it. i was diagnosed at 6 weeks. How are you fareing with Cf now?

newborn screening not until 2004? That's a bit rough, not to mention unfair for the suffering people would've been through being undiagnosed for a long time..

AS for not being diagnosed until 14, it was very traumatic for me and especially my mum (sometimes I think it was worse for her) going from doctor to doctor receiving medication which would only help for a very short period of time. Eventually we were referred to a lung specialist, he decided to do a sputem test which resulted in finding 'pseudomonas', surely enough he decided to do a sweat test stating that there is a low probability but better to be safe than sorry - looks like it paid off.

The reason I was so late to be diagnosed? I didnt fail to thrive just about sums it up, however I still do have an enzyme insufficiency!

ADD: Also Mr. Enzyme I have been waiting for you to be on AIM maybe I didnt add you properly.. Can you add me on 'Decjestia' that also goes for anyone else who would like to tlak about CF.

familyofcf, what do you mean she was your cousin... did she pass away?
Hi Bill, I am a CF sufferer as well. I do squad swimming three times a week and fitness and interschool sports four times a week.