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Klair

Klair

United Kingdom
April 2005

JUL 09, 2005 04:37 AM

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

leiraXariel

leiraXariel

Eugene, OR
December 2004

JUL 09, 2005 05:14 AM

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]

The_Happy_Pig

The_Happy_Pig

United Kingdom
December 2004

JUL 09, 2005 05:16 AM

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.

MetaTag

MetaTag

United Kingdom
September 2002

JUL 09, 2005 05:45 AM

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.

TinyPixie

TinyPixie

Harrisburg, PA
December 2004

JUL 09, 2005 06:51 AM

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

Klair

Klair

United Kingdom
April 2005

JUL 09, 2005 07:23 AM

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

Ryan_Dipietro

Ryan_Dipietro

Naples, FL
April 2004

JUL 09, 2005 07:52 AM

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.

Klair

Klair

United Kingdom
April 2005

JUL 09, 2005 08:56 AM

RyanDipietro said:
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?

Klair

Klair

United Kingdom
April 2005

JUL 09, 2005 08:59 AM

MetaTag said:
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.


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

Ryan_Dipietro

Ryan_Dipietro

Naples, FL
April 2004

JUL 09, 2005 09:20 AM

Klair said:

RyanDipietro said:
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?


Not regularly, I don't think.

hotcurry

hotcurry

Los Angeles, CA
June 2004

JUL 09, 2005 09:28 AM

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

clara

clara

MODERATOR

Baltimore, MD

JUL 09, 2005 11:18 AM

My friend Pat has it and he's in his early 30s now. He had a successful lung transplant a few years ago and while it has changed his lifestyle somewhat I'm confident that he's too happy to be alive to care about not being able to drink any more. I know there have been many hard times for him and lots of time in hospitals, but he seems to be a very happy person, generally speaking. I knew him for three years before I found out he had CF. He just never let it be the most important thing about him.

Here's his story: http://www.thegoons.com/cf.html

Einzel

Einzel

SUICIDEGIRL

Andorra

JUL 09, 2005 09:23 PM

You may be interested in reading about Bob Flanagan. He lived a relatively long and productive life with CF. I wish you and your daughter luck.

Klair

Klair

United Kingdom
April 2005

JUL 10, 2005 02:36 AM

the_happy_pig said:
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.


thats ace! where's he from?

parks

parks

I'm lost
October 2004

JUL 11, 2005 06:54 PM

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 frown

Klair

Klair

United Kingdom
April 2005

JUL 12, 2005 05:47 AM

Pie said:
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 frown


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

Rosscoe

Rosscoe

I'm lost
March 2005

JUL 12, 2005 05:49 AM

Klair said:
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



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]

Klair

Klair

United Kingdom
April 2005

JUL 12, 2005 12:04 PM

Psychobabble said:

Klair said:
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



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)