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Name: sally
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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. 

Name: amanda gunter | Date: Feb 18th, 2011 9:32 PM
i have two girls only one of them have cf it hit me hard when i found out some days or ok but some days are hard she has her ups and downs i hope that they found a cure i look for the days that i do have her then the days that i mite not have her her sister loves her so much i do not know how she is taking all this she i only 3 but she loves having her here if any one wants to talk i am more then happy to i feel like it is better to talk to some one then hide it all. 

Name: lianna | Date: Feb 23rd, 2011 3:56 PM
awwwwss :( 

Name: Denise | Date: Feb 25th, 2011 5:58 AM
Hi Sally.....i am sorry to hear that and my prayers are with you. But i wanted to ask did they do a ambry genetics test? I have a 3 year old going through awful bouts of astma attacks and wheezing, coughin and bouts of pneumonia. A sweat test was done at and he had borderline numbers both times. A ambry amplified test was done to check for mutations ans deletions and it was negative. We went to a cf certified center today and the doctor said that if the dna does not detect any mutations, deletion, etc...then the odds of it being the disease of cf is very low. Several things including eczema can produce false-positive sweat test. I think that there are so many awful forums and websites that jump to conclusions about sweat test and cf. Google the rate of false- positives and it is fairly high being that its said the sweat chloride test is suppose to be the set in stone test for cf. There are people with cf...detected through dna that have cf with normal sweat test and there are people who dont have cf with borderline to high test results. dont let the internet scare you....even if your child has cf it is not an automatic death sentence. There is a man that is 74 in virginia with cf suspected at 30 with negative sweat but positive dna. I wish you and your child the best and advise you to do a ambry dna test or a nasal potential test also. If you only have a positive sweat right now and have not did a dna...then do it. Trust me....dont let them tell you or anyone on the internet tell you its cf with out the dna. People will say that some cf mutations cant be detected and it is true....but the test is 99 percent in detecting mutations and mostly ALL people with cf have detected mutations...with that said i would say the test is pretty accurate. I have even read article in which there is beginning talk of not using the sweat test as leading indicator of cf....the dna test is starting to prove at the top of proving this disease and not proving this disease. Finally, there is still hope in a cure or at least a hope in a longer life span.....today in the new york times there is a new drug that will be introduced to the fda for approval in 2012 that will possibly be a new beginning for this disease in which the drug breaks down the cycle of cf. God is good.....he wont let this dreaded disease stay around too long without a cure! God bless you, your child and your family....stay strong! 

Name: Denise | Date: Feb 25th, 2011 6:09 AM
I forgot to leave my contact info if anyone wanted to ask questions or compare stories.....please feel free to email me. [email protected] 

Name: Denise | Date: Feb 25th, 2011 6:25 AM
Hi Amanda .....i wanted to ask how did they diagnoss cf for your daughter? I read that you asked him how does he know and he said that a sweat test has to be done but that he was 99 percent sure it was cf. I dont know if you have done the sweat test yet...but if you havent then definitely dont jump the gun on this. there are alot lot of diseases that mimic cf....such as auto-immune disease such as sarcoidosis and lupus that can have organ issues such as the lungs. And just plain old astma can definitely mimic cf. Chronic astma can produce excessive mucus that can cause numerous bouts of excessive coughing, recurrent pnemonias, wet junky coughs, wheezing, etc. The sweat test also could be false-positive by conditions such as astma, kidney disease, and auto immune diseases. Again....i cant stress enough the ambry amplified dna test.....99 percent in confirming cf. Good luck and God Bless. 


Name: aleximoon | Date: Feb 26th, 2011 4:27 AM
Hey All....My son who will be 5 in August was diagnosed with asthma 3 days after his first birthday. We have been in and out of hospitals, doctors offices to try and get this under control. It seems that nothing works. He gets the blue puffer (subutamol) and the orange steriod (flovent). He is always coughing (especially at night) and when he gets overlly excited about something. As I tried to look up on the internet on how to control asthma, that is when I came across that sometimes asthma is mis diagnosed for other serious diseases. They listed a few, but the one where he has the most sympotms is CF. When I was pregnant, I asked for the screening of CF and Sickle Cell. They told me that I have no need to worry about being a carrier for either disease because I am not Jewish and I am not Black. With all the times we have had him in hospitals, not once did anyone ever do a CF test or mention it. I have only really know about this disease for less then 24 hours, so forgive me if the next question I ask seems weird. Do people that have CF have asthma like attacks?? Do they do the shoulder shrugging, stomach sucks in, throat muscles show??? Maybe all this time, my son has had CF? We live in Vancouver, BC and there is a CF clinic at the Childrens hospital and they have a 24 hour consultation. Do you think I should go, or should I go to my family doctor first?...Nadine 

Name: Heath Maloney | Date: Mar 8th, 2011 6:40 AM
any body wanna chat bout CF i have it to it got found, when i was 5 months old i am 16 turning 17 in july the 2, ifyou wanna talk here is my email

[email protected]
hope you get back to me, im here to help as well to get help,my life span is 19teen im doing everything from, getting fit taking creon its not working, if you want add me on facebook just email me,,,,asking for it i am making a facebook fan page soon soo cant wait guys not many people know what CF is but my mum knows allot,,,,she tells me everything,so i use that info now to make a facebook page and putting info on it and so on getting it out there, thanks for reading guys and ladys, Heath Maloney :-)
[email protected]
live in:australia 

Name: James Crawf | Date: Mar 15th, 2011 4:15 PM
Hey my friend is running the London Marathon in aid of Cystic Fibrosis. Hopefully this will raise awareness and money for the charity

http://uk.virginmoneygiving.com/f
undraiser-web/fundraiser/showFundraiserProfi
lePage.action?userUrl=NickBrodieLondonMarath
on
 

Name: Denise | Date: Mar 19th, 2011 5:46 PM
Hi nadine, i would certainly say that you cannot think cf just bc ur child has symptoms. I have a post from feb. 25 that i think you should read. Do not pay attention to most websites on the internet...they will scare the crap out of you. I was surprised to see that most sites have horrible info on it concerning cf. For instance the gold standard sweet test....well most sites say is there is a borderline sweat it means positive for cf which is NOT true. Things such as eczema can cause a borderline to positive test as in the case of my son. He has horrible astma...he is 3 yrs old has been hospitalized numerous times for it and has all the symptoms you listed in your post. He was tested for cf by sweat test and has two borderline results....he has the ambry dna genetic amplified test which detected no genes. new studies suggest a negative full panel genetics test is pretty accurate to having the disease or not. yes there are still unknown genes that the test may not pick up but the odds of having 2 rare traits that dna does not pick up is so rare its off the charts in percentages. So please do not just be quick to say cf....i did the same thing when i researched it and my son does not have cf but i thought it by the symptoms he has from his chronic astma.....it can just be very bad chronic case of astma. If you feel that this should be explored request a sweat test ti be performed...remember if you get a borderline or positive request ambry dna gentics test and request the amplified test it is 99 percent accurate. Good luck, my contact info email address is below if anyone wants to compare stories. [email protected] 

Name: hayley | Date: Mar 20th, 2011 6:54 AM
i hav a 11 yeqar old broother.. im so scared of what th future holds 4 him he has cf, asthma and we've recently found out he has diabetes.. does this affect his life expectancey?? if any1 has ifo on this plz email me,, im so worried ( [email protected]

Name: koni | Date: Apr 13th, 2011 11:05 PM
my daughter was 8 when she was diagnosed and she has a really bad pancrease but dont give up and think only on the age limit of the disease. If it gives you any hope i was diagnosed when I was 25 and I am now 40 and my daughter is now 22.. dont give up and stick to the meds exactly.. It is devastating and heart breaking but dont tell her that or thats exactly how she will live and she will get depressed, my daughter started cutting herself at age 15 because she never got asked to a dance and always had a feeding tube.How you act around your child is exactly how she will respond to the disease. pray alot and give her hope and love and tell her every dday how beautiful she is and that she is sick because Jesus has a special plan for her when her life on earth is over.. 

Name: koni | Date: Apr 14th, 2011 1:52 AM
Oh I forgot to leave my email incase anyone should want to write me.. [email protected] 

Name: Theresa | Date: May 3rd, 2011 5:37 AM
Sally,
I am so sorry to hear about your little girl. I am going through something similar, matter of fact my 8yr old little girl is being tested for CF tomorrow, sweat & blood test. I am going CRAZY, i am beside myself... I have moments when I am positive she does npt have it & then the next moment I am crying because I am not so sure... LIke you my daughter has had a chronic chough and wheezing that has been going on since NOV/DEC, we have been to the doctor a million times and she has been on MANY MANY antbiotics and breathing treatments but nothinh has helped, they first thought she had asthma too but now that has changed. I am so scard and don't know what to do or where to turn. To make matters worse this has hit us just as we are in the middle of selling our home & moving to the Dominican Republic, and I ma not sure if they do have the same care for people with CF as they do here, but if we stay here we have no insurance.....When it rains it pours 

Name: shehasmyheart | Date: May 3rd, 2011 5:53 AM
Sally,
I am so sorry to hear about your little girl. I am going through something similar, matter of fact my 8yr old little girl is being tested for CF tomorrow, sweat & blood test. I am going CRAZY, i am beside myself... I have moments when I am positive she does npt have it & then the next moment I am crying because I am not so sure... LIke you my daughter has had a chronic chough and wheezing that has been going on since NOV/DEC, we have been to the doctor a million times and she has been on MANY MANY antbiotics and breathing treatments but nothinh has helped, they first thought she had asthma too but now that has changed. I am so scard and don't know what to do or where to turn. To make matters worse this has hit us just as we are in the middle of selling our home & moving to the Dominican Republic, and I ma not sure if they do have the same care for people with CF as they do here, but if we stay here we have no insurance.....When it rains it pours ↑ 

Name: Shelley | Date: May 21st, 2011 9:01 PM
Just a quick message to say I was born in 81 and am 30 this year, please don't have your child grow up believing they don't have long left as theres plenty of good treatments out now that help significantly in helping manage Cf. Please encourage your child in life just as you would any other child. Love to you all. X X 

Name: Ashley | Date: Jun 13th, 2011 7:43 AM
Hello Sally. my name is Ashley i am a 20 yr old from Az who was diagnosed with cystic fibrosis at the age of 2. i have been lookin for awhile for a website where i can interact with parents or actual CF patients. i am sorry to hear about your little girl i know it sucks and i know exactly how it feels but just know everything will be ok i know someone is 86 yrs old and was diagnosed at age 4. I would b glad to answer any questions you may have and am here for you :) you can write me back here or on my email im not to sure how it works haha but my email is [email protected] 

Name: Sandy | Date: Jun 26th, 2011 11:45 PM
My daughter was two when she was diagnosed with Cystic Fibrosis. I fought with her doctor because she kept having lose stools. He kept putting her on Zythromax and that didn't help. It took me moving to another town in order for her to be sent to a Childrens Hospital. They did a sweat test and the first one came back inconculsive. so we had to go back for another sweat test and that came back positive.
She was in the hospital for a week so I can learn how to give her pills and do her treatments and precussions,. The daycare that she was in didn't want to deal with her because of her disease. But I found another person who would and did take real good care of her. She has been hospitalized two in the last three years with peumonia. her lung function is 76% now and I have hope she will keep it up there and hoping it will get hired.
does anyone else have a problem with there child not wanting to do there homework or comprehending what they are to do with there homework? My 15 year old has a problem with comprehending what she is reading. So that frustrates her, and she doesn't want to do her homework.,
Please let me know if you have the same problems or have any suggestion. Thank you 

Name: Douglas | Date: Jul 1st, 2011 6:23 PM
No mam she has as long as her heart desires to fight this disease with the medical breakthroughs
Your daughter could live well past her 30's. I am coming up on my 30th birthday in November of this year. It determines the fight in person with the disease how hard they fight. Keep your head up and be strong for her when she needs you. 

Name: Penne | Date: Jul 14th, 2011 12:12 PM
Hi all
I'm a new mum of a gorgeous seven month old baby with CF. She was one of the unlucky ones who had meconium ilius (bowel blockage), had a stoma and has since had it reversed. I have researched the crap out of CF so know a fair bit about it all, but I need to hear from those of you out there either with CF or caring for someone with CF as to tips that you swear by to stay healthy and prevent secondary bacterial infections. I know physio, exercise, eating well, hand washing etc etc, but am interested in hearing about things like - being wary of public swimming pools (pseudomonas can grow in them if PH levels are not high enough), sandpits and still water lakes etc. Any other areas I should make sure to protect my bub from? And any natural therapies anyone swears by? I have been using Collodial Silver - adding it to her glucolyte to kill bacteria and black seed oil in the hopes it can help in some small way rectify the misfolding of the faulty gene - anything that might help. Also giving her crushed up superfoods like Chia Seeds which are rich in Omega 3, antioxidants, vitamins and protein, all of which are extremely good for people with CF. Does anyone have any other tips I can follow? I just want to do everything in my power to raise a healthy baby, any help I can get from you all would be very very much appreciated. I feel if I only do what the doctors tell me, I'm not doing enough - please help!!! 

Name: nancy | Date: Jul 20th, 2011 5:20 PM
im a 45 year old female with cf and got diagnoses late in life also it doesnt mean your daughter has any lif span on her just live ur life as one day at a time and so should your daughter.....who knows we could walk across the street and get hit by a car it doesnt mean that cf is gonna do it.....i have a 15 year old daughter is who a cf carrier but no disease......your daughter has a whole lifeahead of her and let her live and you as a mom have to teach her that.....my parents taught me that.....good luck and i hope i helped u... 

Name: Steven | Date: Aug 3rd, 2011 8:11 PM
sorry sally. but i am actually a person who has cystic fibrosis. The statisic you've choose to say is acutally un true. you can live longer then 30. its all about how you take care of your self. and eventually when the cystic fibrosis take over the individuals lungs almost totally, theres always the option of transplant which also adds on multiple years. its ver unfair that you've somewhat given your daughter a death date? 

Name: Karen | Date: Aug 12th, 2011 11:09 PM
My sister just passed away at age 55. Diagnosed as a young child she led a full and beautiful life, married adopted a child, had her doctorate. She was my hero who taught me that nothing is impossible and that every day and every breath is a gift that should be cherished 

Name: Dustin | Date: Aug 21st, 2011 2:48 AM
You can live up to 50 years old or older with it. As long as she doesn't over due it. But keep her active just not overboard. 

Name: stacey | Date: Oct 11th, 2011 7:19 PM
im am 15 and ive was told 3 weeks ago that i have cf, i was devastated but then i realised i have lived with this for 15 bearly 16 years of my life and im still the same person. i have been in hospital for 2 weeks now and going home friday, cant wait. it was a big shock but i said to myslef just live with it and im getting on with my life im still going to go out with mates, have relationships and enjoy myself x 

Name: leah | Date: Oct 19th, 2011 8:57 AM
i have a son hes 7 and was diagnosed at 3mnths old and hes bin really well apart from the odd chest infection,hes bin in hospital 4 times fr iv antibiotics in the howl 7 yrs,hes just piked up a germ thats a no go for cf patients ad is waiting to find out wat treatment he will be recieving.i would love to talk mre with parents in my situation as never spoke or met a child with cf. 

Name: Evan | Date: Oct 31st, 2011 4:16 AM
My name is Evan, I am 16 years old, and I have CF. Honestly no parents should be too worried. I was born at risk and had to hospitalized when i was two weeks old. Since then I've been hospitalized around 50 times and my health has always been at risk. When I was 14 the doctors told me I could only have 5 more years to live. But the thing is, is that with a positive attitude I have an amazing quality of life.
Instead of worrying about your children health wise, make sure they are happy first, because in the end that's the most important thing. 

Name: makayla | Date: Nov 11th, 2011 4:38 AM
Hi, just wanted to wish Ur daughter the best of luck! My husband was told he wasnt gonna live past 16. And now hes 29 hes working full-time he does everything he enjoys doing in life. He just has to take good care of his self, workout everyday at least 30 mins and take all his meds. For all of u living with CF I pray for a cure everyday! Don't give up on Ur self. Someday hopefully in our life time they will find one. Wish u all the best of luck!! 

Name: paul | Date: Nov 29th, 2011 2:20 PM
dose any one know of any charitys for cfs age 25 please get in touch thanks 

Name: Tyrone scott | Date: Dec 2nd, 2011 6:53 PM
my name is tyrone scott i have cystic fibrosis i and 13 years old early this year i nearly passed away because of it and i have the best mum and dad ever they get me whatever i want i have a little brother and a older sister my brother also has this deasise and he is so cute and my sister is really good at drawing she is 15 and does not have cf but i just wanted to say you can acive anything as long as you dont let cf put you down and try not to fell sorry for youself 

Name: kaila | Date: Dec 30th, 2011 7:06 PM
Hello, I also have this diagnosis and i would really like to tell anyone who is struggling to breathe as i was, to at least give a try and buy and take Bromelain ( at least 2400GDU) daily ,2 tablets . It helped me so much,after few months of taking it,that I can breathe normally again! This is only my opinion and experience,i wanted to share. Thank you. 

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