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Carrie Ann
New Member

Date Joined Mar 2006
Total Posts : 4
   Posted 3/5/2006 12:48 AM (GMT -6)   
I have just started to learn about CF to help my sister-in-law (30 yrs old) and her new baby (who
is 3 weeks & has CF) out. Is there is any advise you can share with me to help her out. Also, are there
different levels of CF. I also have heard some of you mention "gene Therapy" . Could
you please advise me what that actually is.

I want to help her through the shock and being scared. Any advise is greatly appreciated.
Thank you.

momma cat
New Member

Date Joined Mar 2006
Total Posts : 9
   Posted 3/7/2006 9:09 PM (GMT -6)   
well it is not easy having cf the only thing i can tell her is to hang in there and don't lose hope because it is not easy i haven't had cf but 10yrs and it is driving me crazy because it will make you go crazy so just tell her to keep her hopes up and love that child as much as possible

best regards to you and your sister
lil bit

New Member

Date Joined Mar 2006
Total Posts : 2
   Posted 3/20/2006 11:35 AM (GMT -6)   
Hi Carrie Ann

I am 24 and just visited this site for the first time today. I was looking on advice about travelling the world and how to cope with the medications i have to take with me. I was diagnoised at 6 weeks. My life has been pretty good and i have been quite well. My advice to you is just treat the baby as normal as possible. Dont let the CF rule its life. Its just something that you have to get past. My mam always mad sure that when ever i had a chest infection it was taken care of early, also as soon as the baby is walking incourage excercise. CF is about keeping lungs healthy.
Dont know if im just the luck one but thats my advice
Take care and be strong for your sister in law

Regular Member

Date Joined Sep 2005
Total Posts : 318
   Posted 3/21/2006 7:17 AM (GMT -6)   
Carrie Ann,

First of all, welcome to HW Forum, CF Room. Please, make yourself welcome and feel right at home.

I am a mother of twins with CF. If you had of offered your assistance when my twins were newborns.....I would have been hugging you saying...thank you thank you thank you!!!. LOL.

Anyway, some things that you can do is:

1. Get her a briefcase that can hold all the medical information, doc appts, teachings from the different medical team of the CF care center. She will need your help here learning how to cope with a baby with CF, and helping her sort out things will be a HUGE help.

2. She will not be herself when she starts to learn about CF and how to care for her baby, please be patient with her short feelings and remember to check up on her daily offering your assistance. Once she truely finds out everything there is to know about CF, she may be distant with family members to help her grieve (don't be too concerned). At diagnosis, parents go through a grieving process (this is normal). Please give her space if she goes through this, but, too much space might not be good, depending on her feelings. I am hoping she will not go thru this, but, most likely she will. When and if she says, I just wanna be left alone for now, she really does mean it. Since you are her sister in law, please don't take things too personal, just give her lots of hugs and let her know you are there when you need her.

I have to get ready for work now, but, will post later on some more suggestions if I have time when I get off work today (usually it's pretty late). talk to you later, and thanks! for your attention towards wanting to holp a mom out with a child with CF, it means alot to her.

Kathy, mom to identical twin boys with CF (10 yrs), daughter 21, grandaughter 3, Newborn grandson
If there is a CURE for Cystic Fibrosis this very moment and this is "not soon enough" would hear this twins mom "Across America" "YESSSSSSSSSS"!!.
Moderator, Cystic Fibrosis.  "If there is questionable doubt, check it out"....with your healthcare provider!.  We are here to offer support, encouragement, and answer your questions as best we can.  Don't hesitate to step on in and enjoy!.

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