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Name: sally
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Name: Grainne | Date: Feb 20th, 2010 3:33 AM
Hello. im lookin for a chatroom with another Cystic fibrosis user. iv C.f Myslef .. sence Brith. im 15 yrs old liven in Ireland..Write back to me please thanks =D x 

Name: Tiffany | Date: Feb 27th, 2010 5:21 AM
i hope all goes well for yall im just turned 15 and i will be hospitalized every 3mo or so usually its a 2wk stay but as long as i get better thats all that matters umm i have been having a pretty hard time with treatments cause im always wanting to hang out with friends but just to let you know i have heard about a woman with CF shes 85 or so and really it all depends on how you take care of yourself umm it has gotten to the point that i cant have IVs cause i have blood clots and im diabetic wich sometimes happens when you have CF theres a chance but your daughter will be ok i promise you and only God knows when your gonna die the doctors dont so dont worry GBY! [3 

Name: Savannah | Date: Mar 7th, 2010 7:43 AM
Hi im Savannah im 13Years old and i just heard that my life span is only 30 is that true i dont want to die im a healthy child, im really athletic & love running please email me if you can help me im really upset about this [email protected] Please im really devesated about this and need someone to talk to :( please help 

Name: Charli davies | Date: Mar 12th, 2010 11:19 PM
It is hard for me too say i understand how you feel , because i dont, but i have an idea.
I am now 14 years ol and i have cystic fibrosis, if u ever need advice, or your child ever needs any advice, just email me at ;

[email protected]

Good luck x 

Name: Lisa | Date: Mar 26th, 2010 1:55 AM
Hello. My daughter is 4 and has CF and she's doing relatively well in comparison to her peers. She is our only child and her father and I would really like to have more children, however, we are terrified that our next child might also have CF. Her gene mutations are Delta F508 and S549N and I'm curious to know the prognosis of these 2 gene combinations. Does anyone have these 2 that would be willing to share their or their child's prognosis? 

Name: CiCi | Date: Apr 7th, 2010 8:52 AM
Hi, I have CF. It can be very hard to have to one day your ok the next day your having a coughing fit!
Sport is very important to keep us healthy but we have to put on weight.
I have had a lot of IV lines and they really hurt.
I was diagnosed with CF not as soon as i was born i was at the point that i nearly died.
But i am still here now and my doctor is very proud of me.! 


Name: Lori | Date: Apr 7th, 2010 3:02 PM
Sally..
Firstly, I'd like to let you know that MEDICINE has come a long long way since Cystic Fibrosis was first diagnosed. I am a 37 y/o female living with Cystic Fibrosis. When I was diagnosed at birth, the median age for Cystic Fibrosis was 12. It then went to 20, now the oldest person in my Cf center living with Cf is in their late 40's.... I knew someone who passed away in his early 70's who was diagnosed in his 40's..
Please don't feel that you only have 24 years left with your daughter. Cherish every moment and day with her and never feel sorry for her. She will just want to belong and feel normal like the other kids her age......
I just wanted to share this information with you- and I'm sure if you speak to your daughter's Cf center they can give you a better idea of how many advances have been made to keep us living longer healthier lives........... Best wishes...........
([email protected]

Name: laura | Date: Apr 9th, 2010 1:50 PM
hi im laura i have 2 children 2 boys my youngest is 6 months and has had a persistant chest infection since 3 months old hes always weezy he had the heal test and it came back negative but why is he getting this bad chest all the time does it mean he has cf please help. 

Name: Leah Forde. | Date: Apr 23rd, 2010 12:06 PM
My name is leah forde and i am 17 years young !. I was diagnosed at one days old, they picked up on it so early as i had a bowl blockage which is verry common for cystic fibrosis sufferes. As you grow older with cf you learn not to belive everything the doctors tell you. they are there to help but no one knows your own body or your childs body then you do. the doctors are there to guide you but your the ones that will go into hospital oppiontments and tell them what it wrong. when i was born i was at st marys hospital and there were so behind on research they out me on chicks fat and my parents were told not to give me dairy products, which is the biggest thing in a cfs daily consumtion. it wasnt untill i wasnt gaining wait , i was constently throwing up , and not normal baby sick. all babies get sick , but this was progectile vomiting. everyone thought my mum was going mad and no one was listening to her. she went to another hospital, because he friend told her about it. i went there, royal brompton and we have never looked back. they put me on the dairy i gained weight and for the first time my mum felt my health and my life were in good hands. any one with cf or have children or friends feel free to add me , leah forde on facebook 

Name: Vaughn Tayler | Date: May 6th, 2010 5:39 AM
Hey everyone hows it going ??? btw my name is Vaughn Tayler and i have cystic fibrosis and i have had it since berth so would u please reply back to me cuz i would love to meet new people that have CF i have got told that i was the healthiest CF kid in Canada from my doctor so please believe me if u don't cuz its true anyways please write me back would be nice thanx

Vaughn 

Name: nanny | Date: May 11th, 2010 6:19 PM
hi my name is Anna and I have cf since I was born I'm 11 and I have a older brother whos 14 and a younger sister who is 5 and we all have cf
and life is fine its not a death sentence or anything it just means to try a little harder...and on the plus side its harder to get fat!!!!!!!!!
anyways not many people know and not many notice the just think I have a bit of a cough so really if you have cf just try a little harder than everyone else and act like you don't soon it will be fine youll get used to it! 

Name: leanne | Date: May 14th, 2010 3:14 PM
Hi all
my name is leanne, i am organising a charity black tie ball in aid of starlight childrens foundation ( the charity grants wishes to terminily ill and sick children)
Ifor further details please email me [email protected]
p.s i admire all of you who are giving alot of support andcare to your loved ones 

Name: Dermgunner | Date: Jun 4th, 2010 12:51 AM
My friend is raising awareness for her sister who suffers from CF. If you would like to help support the cause, please check out my website.
http://dermgunner.com

Thank you so much and let's fight this illness!! 

Name: lou | Date: Jun 9th, 2010 2:09 PM
hi sally my daughter is 11 yrs old and has cf, she wasnt diagnosed until she was 18 months old. this also devastated me as previous to this i had lost a baby at full term. this was adouble blow for me . it has made me a much stronger person its hard but i have a very strict routine with my daughter loads of exercise , trampoline gymnastics swimming these all keep her lung function great . you cant say your daughter has 24 years maximum left you just dont know . keep her active chest as clear as you can . i know its hard sometimes im one my one taking care of my daughter and i also work . stick in there possitive attitude really works . dont get me wrong ive caved in a few times but thats normal . we fight sometimes cause she says im not fair pushing her all the time but the way i see it i wudnt be a good mam if i didnt . take care and stick with it. 

Name: justin sigley | Date: Jun 12th, 2010 3:11 AM
hey my name is justin i have cf. i am 21 and been coping with this disease since i was born. when my mom found out i was 3 months old and she was devastated and scared to death. they told me i wouldnt live long 15 at the most. but hey im still doing great been thru some rough times but i pulloed thru. i dnt know if this will help but stay strong and god bless you. 

Name: Brandy | Date: Jul 13th, 2010 5:48 AM
That "Life Expectancy" the doctors gave you is just an "average" meaning that 50% of the CF population make it to that age and 50% don't. It doesn't mean at the age of 30 your daughter will drop dead. She can surpass that age, .. . . by far!!! And it's not "picked up" at birth. . . it's GENETIC - you have to be BORN with it. You cannot "catch" it. It sounds like your daughter has a milder case of CF, believe it or not. She must, if it took that long for a proper diagnosis. Which is a good thing. Those with milder forms of CF live MUCH MUCH longer lives!! You sound like you just need some more education on this disease. My daughter is 7 and was diagnosed at ten months of age. They have newborn screening for it now in most of the 50 states. They didn't when she was born. Good luck with everything! 

Name: anita bellerose | Date: Aug 1st, 2010 10:39 PM
Hi Everyone, I`m a Nurse and I also have 3,5 years old boy with mild cf. Beside the base sickness the best u can do is to boost their immunsystem. The prevention is the key in this situation. So boost their immunsystem in every way u can. Get drops, natural staff from healt food shops.etc..But most importantly watch their diet.
It is painfully true...`you are what u eat`. The immunsystem is working the best when the body PH is 7.35. It means the body naturally is alkaline. Unfortunatelly our `westernised diet`contains heaps of acid forming foods .When ur body is acidic u have much higher chance to catch anything and the high acidity is also slows down the healing process. So... have or give highly alkaline forming foods...the list of foods are available from the internet if u google it.
But pls dont believe in anyone (even in nurses) who says : `from now on ur child can have junk food to help to put weight on`.Rubbish(. I`m working in the Health system, we are disease orientated we have tools to cure it not to prevent it. ) The prevention will be your job.
But what ever u do be absolutely positive, the positivity had cured some of my patient .Despite of their sickness they wanted to live and they did .Also we parents needs to be positive too. Our litte souls take over our feelings, copying us whatever we do. 

Name: rocqual | Date: Aug 4th, 2010 6:45 AM
Hi my name is Rocqual i have a 7 month old daughter with cf and im the only one that does her meds. I just started school and her dad does her meds at night but he some time skips it. what happens in the future if she dont gets every night? would she get sick? 

Name: Laineysmom | Date: Aug 5th, 2010 4:03 AM
My name is Jodi and I have a 5 week old baby girl that they suspect may have cystic fibrosis. Her newborn screenings came back abnormal twice and now her sweat test has come back with high readings. I have a healthy 3 year old daughter who has never been sick...aside from the normal stuff. The last few days all seem a blur and tomorrow we go to a pediatric lung center to a pulminologist to start screening and to be "proactive" (as her pediatrician says). What I can't seem to get yet is a definitive answer as to whether she has the disease or just the gene. Can someone help out an impatient mom here? I don't understand and the internet doesn't seem to be helping me!! She shows no symptoms what so ever. I am told that CF babies can suffer from constipation, failure to thrive etc.! She doesn't have anything...just abnormal & high test results! No family history on either side of our families! Can anyone give me some advice/help/peace of mind that things will be ok? Tell me what is going to happen? I am so confused! Everything sounds like Charlie Brown's teacher at this point in time! 

Name: Dreamer | Date: Aug 24th, 2010 3:58 PM
Hey guys! My name is Daina. Im 18 years old. im currently in high school as a Senior. I was diagnosed with CF at the age of three months. My doctors continually told my mom that i wudn't live long, that i'd die at the age of 3,6,9,12,15....etc. Bull Crap! no one on Earth can possibly say how long someone may have. No one even has the right to guess. Only God knows! When im healthy i enjoy running, riding bikes, walking, swimming,swining...But i love horse back riding!!! When i was 10 years old i had a stroke. I spent 21 days on a respirator and im not sure how long in the ICU. i have short term memory loss, im diabetic, and i suffer from depression. However, I will not admit defeat to this disease. I just can't. my mom is costanly riminding me of how strong i am. usually i believe her. tho there are times like now when im sick its hard to see any reason to get out of bed. But to stay in bed is to give up and i can't do that. I strongly advise anyone who has CF or a loved one with CF to always, always fight!!! We only have so long on this planet. Live every day like it matters, cuz ultimatly it does! u never know when he's going to call u home. Enjoy life to the fullest! I am searching for kids like me to talk to. I know that there are times when you look out the window and see people smiling and laughing, but you think your alone. Your not! I go throught that myself...often i see my family playing and wish to join them but have to do treatments first. Ive always hated them. they so much time.But its better than the alternative. Dieing sooner. So duh, treatments are important. However i used to seriously um....difficult. i often skipped treaments. and now my lungs are suffering. so to answer rocqual....yes she will be sicker. She needs all her treaments. even if she had a mild case of CF it doesn't take long for the lungs to get sick. CF makes our immune system real weak so She could get sick faster. If she skips now, she'll suffer later. it is very important not to skip anymore, because once the damage is done, you can't fix it. Life with CF can be hard. but we CF'ers become stronger mentaly and physically than others! We also can get a greater perspective of life. I now realize that its preacious! I want to have kids and go ride on the beach with my family! I might sick but that doesn't mean i can't do what i want. I have pets. 2 cats, a dog, and i own 3 horses. tho i ride at least 7! I enjoy camping! and i can! Watever you do don't give up hope! LIVE!LAUGH! LOVE!

for those who are seeking comfort from others like themselves email me at :
[email protected]

Please don't hesitate to email me. I'd like to have someone to talk to! God Bless You Guys! and have a long and happy life! Good Luck! 

Name: william | Date: Sep 7th, 2010 5:14 PM
hi my name is will and iv got to have ivs next week 

Name: william | Date: Oct 2nd, 2010 5:57 PM
hello 

Name: heath maloney | Date: Oct 15th, 2010 8:28 AM
hi my name is heath maloney i am 16 and i have cf im kinda sad i hope i live to my max age and i take creon tablets i need help im getting bad and cough like almost 247 

Name: Nicola | Date: Oct 19th, 2010 8:01 AM
Hi my little girl is 20 mths old now and was diagnosed with cf at 6weeks... the genes are supposed to be mild... the last three weeks she has been on antibiotics for chest infections... she has been throwing up aswell which im really worried about... just want to know if there is someone else out there who i can chat with... i keep going back to the doctor but i feel like im being over the top... but im really worried and i dont know whether i need to contact the hospital about her and talk to some one there who deals with cf... any advice would be appreciated 

Name: kimmy313 | Date: Oct 26th, 2010 5:23 PM
my son has cystic fibrosis he is 1 now. we found out when he was 3weeks from the heal prick test. he was really ill from the start but health visitor said he was fine and that i was worring over nothink. when i found out i didnt really know anything bout cystic fibrosis but i was angry that the health visitor wouldnt listen to me before. he ended up in hospital for two weeks the next day we found out. he was always in and out of hospital but hasnt been in for a while. hope your daughter is ok. 

Name: kimmy313 | Date: Oct 26th, 2010 5:34 PM
hey nicola my son is 1 he has cystic fibrosis he used to be sick after every meal he was given medication for it. i would inform your childs cf doctor of the concerns you have and they should help. 

Name: richard | Date: Oct 29th, 2010 9:45 PM
awwwwwwwwwwwwwwwwwwwwwwww 

Name: sara | Date: Jan 31st, 2011 7:02 PM
Hi Sally I am so sorry to hear about your daughter. My thought and prayers are with you.
I have a 2 year old son and he has the same sypmtoms your daughter had and the dr's always thought he had asthma and his cough is so loose and so much liquid he is on ventolin and then the orange puffer daily. he has been in and out of the hospital several times. he is going for the sweat test tomorrow. I am very nervous. But I was wondering what other symptoms she might have had. I am just very worried like any parent would be.
Thanks so much 

Name: mother | Date: Feb 3rd, 2011 4:34 PM
my daughter is 27 never did i put her lifespan in numbers . If we had thought this way then it was all over before we had began 

Name: BeBosse | Date: Feb 11th, 2011 2:54 AM
The life expectancy is just an average, there are many people who live well into their older age! And the new average age is 37. There is hope. the gene doesn'tmutate, so they can work on it without any suprises.
There are many of us out here for support. All it should do is make you realize how precious each day is.

Name: amanda | Date: Feb 18th, 2011 9:21 PM
i have a two kids but only one of them has cf i found out that she has this when she was three months old it hit me hard when they told me they said that we was just going to alt to see if she has it are not and the first time when see the dr he was talking and acting like she had it i asked him how dose he know she has it for sure he said we have to do a sweat test to find out for sure be he said he was 99% sure that she has it and after that i have been taking one day at a time it is hard some times but i just look at the good side of it atleast i have her now and hope to have her for a long time and hope that they can find a cure i would love to talk to any one that will talk back it seems to be easy if i have some one to talk to that is going thourgh it there self. 

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