cystic fibrosis

do any of you have cystic fibrosis, of know anyone who has it? i'd really appreciate some info or feedback. my daughter has it & i want to know what the future holds for her & what kind of life she'll lead. i have been told stuff by doctors but would really like to hear from someone who actually had the illness. is there anyone out there with c.f over the age of 20?
thanx, klair
xx

One of my friends from highschool died a few days ago from cystic fibrosis... he was 19. Another girl I know just learned that her cousin died from it about 3 weeks ago as well. The cousin was 24.

You can live a good life by the age of 20 and I'm sure you'll do everything you can to help your daughter do that.

[Edited on Jul 09, 2005 by leiraXariel]

There's a guy I know who has CF, he's in his early 20s, I'm not too sure exactly how old. He's fine at the moment, and has just become a fully fledged tattooist.

I worked with a bloke who had CF, who lived until his early 30's.

He had a good sense of humour, but he was understandably, quite cynical.

The Cycstic Fibrosis Trust has boards for parents, who could give you help and support.

Girl I know from college has it. She's mid 20's and engaged to be married. Seems to be managing it well, but at one point had dropped out of college due to her sickness. But she went back and finished her degree. She also has some other ailments, so It may have been the combo that caused her to leave

wow thanx everyone,
i know the prognosis is getting better all the time & apparently they're expecting to find a cure in the next 10 years time so hopefully by that time she won't be too sick to have the treatment. i just can't get past the fact that at the minute there is no cure

A friends daughter has it. She's 11 and shes just as active as all the other kids. They do have to keep her on a pretty specific diet, though.

erins diet is normal, she just has to have medication before she can eat anything. does your friends daughter still have physio?

yeah i should really check it out, i've just had so much information from medial professionals i just wanted to hear from people who aren't doctors & such. to get a less biased opinion

Not regularly, I don't think.

Please check out this group they are super helpful people on SG when it comes to these things.

thats ace! where's he from?

I had a friend in highschool who has cistic fibrosis she turned 20 in March or April I think. Her younger brother has CF and Down's Syndrome as well. I haven't heard anything about either of them. This thread makes me want to get back in touch with her

maybe you should. you might not have that much time & will regret it when she dies

my flatmate and friend who was 21 died of it about 3 months ago

they said he wouldnt live til 10, but with technological and medical improvements during his life he went alot further.

[Edited on Jul 12, 2005 by Psychobabble]

i'm so sorry to hear that xx
(thats sorry that your friend died, not sorry that he lived that much longer)