Name: sally Title: cystic fibrosis

I have the most beautiful 6 year old daughter in the world, for the last two years she had been getting asthma or so the doctors thought ,they put her on ventolin ,then a preventer and steroids as she always got a chesty wheeze. After going to the doctors again for like the 6th time in two months they finally sent me to the childrens hospital for tests. She had to do a sweat test a blood test and a cat scan of her chest.
The sweat test came back positive for cystic fibrosis I was devestated.She has a life span of 30 so she has 24 years left maximum. This is a disease they are suppose to pick up at birth but hey it didnt get picked up.
So if your child ever gets persistent chest infections keep going back to the doctors until they listen to you because you need to trust your instincts, your there mum you know your children better than anyone else.  ?

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Name: Helene • Date: 02/10/2006 05:35:22

incase u would like to email me, my email address is Helene_hedman@hotmail.com
My son has cystif fybrosis, he was almost 4 when i got told he had it. Yes very scary, in time it does get easier, and just because they say around age 30 dont believe it, be postive and follow ur heart . I found it best to talk to ppl goin through the same thing, but for some reason most ppl dont want to talk , they want to hide, they dont want here kids to be known as different, well my son is 13 now and he has his ups and downs but it gets easier to deal with, just take one step at a time and dont think about the life span think about the now, cuz who knows wat could happen they could get hit by a car tomorrow, they may find a cure b4 we even have to worry, im here if u ever want to talk, email me, always glad to help, through my experience and always know doctors are not always rite, follow ur heart and everythin will be alrite, take care hope to hear from u  =

Name: jenna • Date: 02/26/2006 07:09:19

My name is Jenna, my fiance has CF, he is 22 now and was told he wouldnt live past his 21st birthday. This just goes to show that doctors are not always right so dont get down about the situation. I find it heard to deal with and get upset about it regulary. My fiance deals with it really well. He has a chaest infection at the moment and is on anti biotics. The doctors that we have arent very goods with CF and dont understand the severity of it.  =

Name: stephen walsh • Date: 03/18/2006 14:09:54

Hey Sally,
My name is Stephen and I have cf, I am 16 years old. I also have a bro 11 with cf and a sis 25 with cf. we are all fine. look i know a 73 year old with cf and a 55 year old. Dont listen to your doc 30 years maximum ....... a load of crap. look if your 6 year old managed to make it to 6 without being detected she have it mild. look email me at koalawalsh@hotmail.com your daughter will be ok .... it aint all doom and gloom also ill show you a site with alot of cf adults. Please email me  =

Name: sally • Date: 03/21/2006 23:27:51

hey stephen thanks so much for your input really appreciated it. so nice to hear from someone who actually has it and yes you are right she does have it mild to look at her now you could never tell.thanks again i really appreciated it it has made my day!  =

Name: kye • Date: 04/19/2006 13:16:07

hello,
how are you doing there,please mail me back i will help you out kye_mya@yahoo.com.i will be expecting you mail.

cheers  =

Name: Ro • Date: 04/22/2006 15:55:58

CF is not a death sentence. I have 3 children with it. My daughter wasn't diagnosed til age 6 - I had already had 2 other children!  =

Name: lou • Date: 08/31/2006 19:58:22

Hi, I'm 38 yr old woman w/CF, I even have a set of 4 yr old twins. 30 PHOOOEY!!! Treat her like she doesn't have the disease. We are living longer and longer!! My brother in his 30's also has it! God Bless!  =

Name: JAB • Date: 09/15/2006 20:56:11

I have met children with CF who have been helped drastically by adding glyconutritiionals to their diets. I can get you in touch with the families if you like so they can tell you all about it and how their children responded. I would love to get you the information so you can check this out. my email is darellandjean@ccountry.net if you would like information on this  =

Name: Patricio • Date: 07/15/2007 22:41:30

Am 13, I have CF. I've live with it every day.Am done with it.I have chosen not to have a transplant. I don't like the daily pain , the daily pain on my mother. I was told I would live til 20 maybe 30.but truth be told.when you what out you what out.I was woried about my my mother, being alone. I have a brother whom i love with all my heart and i know God sent him, so when am gone. He would take care of my mom. I wish that everybody would understand that when we are ready to give up. we are ready.stop being selfish. we hurt.. it hurts to take a breath.and I know there are alot of moms fighting for their kids..but listen to them..when we are done. we are done. not because be we gave up on you guys, but because we want to be @ peace. we knew you love us, and you did everything 4 us.  =

Name: gabriella • Date: 08/02/2007 05:46:31

first of all, yes it may be devestating,, but u know what enjoy what u have becuase having a chronic illnesss doesnt mean anything im 17 and i live life normally i dont think of how many years until im going to die in fact i dont care,, becuase im alive now and im happy with who i am where i am and what i got and it angers me wen i hear of people speaking of life spans for cystic fibrosis becuase it dont mean shit :) and no one knows wen ur time is up  =

Name: Gina Fine • Date: 08/22/2007 11:33:09

Your daughter does not have a maximum life span. My daughter was diagnosed at the age of 3. She is now 4. The doctors and I expect her to live a long, happy life! If you do the treatments and everything your doctor tells you, She won't have any major problems and She could even live to be 65 years old. I say that because I know someone with CF who just turned 65.  =

Name: Gina Fine • Date: 08/22/2007 11:42:40

I have a 4 year old with a severe case of CF. What I don't understand and maybe ya'll can help me with this, is if you have at least one child with CF and you know that your chances of having another one with the disease, Why would you do it???? I don't understand people with children who all have CF! For one thing, Don't you already have enough on your plate without adding one more child to the equation? And secondly, why would you put another one through all of that?? I'm trying not to judge, however, I am curious and would like to here from someone in this type of situation. Thank you for reading.  =

Name: Flor • Date: 08/23/2007 21:01:15

hi my name is Flor ni have cf. im 16yrs old. n having cf has been so hard for me in this pass years. i wish i didnt have this. i never had meet somebody that has cf like me n i would like to talk with somebody that does. i need someone that has been through all this crap.  =

Name: Jess • Date: 04/07/2008 09:10:47

hey i have had 3 cuzins with it...all of whom are dead right not and then my aunt and uncle had decided to have more kids and they ended up with twins...the oldest twin has CF and the yougest doesnt.....its horrible i know...just charish every moment you have with ur daughter.....ohh if you want to email me back my email is sessha_14@msn.com  =

Name: Jordan Magsamen • Date: 04/13/2008 21:37:25

Hello sally! i am a child with Cysitc Fibrosis, are you involved in any of the walk or fundraisers?
here is my email. if you have any questions i am here to talk to! keep stron!! =)

jordanmagsamen@hotmail.com  =

Name: jose • Date: 04/15/2008 13:49:06

how do u know you have cystic fibrosis?  =