| Name: christine | Date: Feb 11th, 2009 7:02 PM |
| hi, i have a daughter with cf, she is 9 and was diagnosed when she was 7. i have to say thatbecause she was diagnosed so late , her lungs r scared and her doc says she has mild lung dicease. i think as long as she does her meds right and her vest machine the way she is supposed to things will be fairly good . of course there will alwys be bumps in the road. but i also have to say that since she has learned about her illness she has been more aggresive in her behavier and not in a good way. does anyone else have this problem ? ↑ |
| Name: Ellie | Date: Feb 17th, 2009 4:53 PM |
| i'm a 15 year old girl living with CF. i was diagnosed when i was 2. The doctors say i'm only gonna live to be 30. that means my life is half over. i don't let that get me down. actually, just last year when i was 14, i got my 2nd lung transplant. the 1st was when i was born. something was wrong with my lungs, but whatever. i deal. it was scary for my father and older brother (9 yrs older than me) to hear that i had CF. it was scarier for me. i usually try and hide the fact i have this disease, but it's gotten harder and harder to hide. just keep your chin up and look on the bright side. it makes living with CF a whole lot easier ↑ |
| Name: eeeeee | Date: Mar 2nd, 2009 9:50 AM |
| eeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeee ↑ |
| Name: rachel | Date: Mar 2nd, 2009 9:51 AM |
| hahahahahahhahahahahhaahhhahahaahahha ↑ |
| Name: kirsty | Date: Mar 2nd, 2009 9:54 AM |
| Name: Macaela:) | Date: Mar 6th, 2009 11:28 PM |
| Hey my name is Macaela and i have cf. I'm scared because my doctors say i have to gain a ton of weight and then i think im fat. Any advice? ↑ |
| Name: leah | Date: Mar 11th, 2009 10:08 PM |
| hey sally. i'm a 17 year old girl with cf and i want you to know i am healthy and if you take care of your daughter there is no way she'll die at 30. please dont give up faith. there's a reason for everything and your daughter is lucky as this disease will teach her so much. i'm not thankful for it, dont get me wrong, but she'll become a woman of great strength if you pursue a normal life for her. shes no different. this disease is just a test from God. not only her's, but yours as well. she's a miracle. love her. and take care of her. she'll be closer to you than you'd ever imagine if you treat her 'normally'. life is precious. please understand that there is hope and your doctors will do all they can for you. just listen. and take what they say seriously. i'm praying for you. stay strong. ↑ |
| Name: shirley | Date: Mar 16th, 2009 9:26 PM |
| hi i my little girl with cf ↑ |
| Name: shirley | Date: Mar 16th, 2009 9:37 PM |
| my daughter with cf she was a 2 month old when the doctors told me she had cf at frist it was hard to see her so sick ↑ |
| Name: amanda | Date: Mar 17th, 2009 5:48 PM |
| In response to your post Sally, i have Cystic Fibrosis and i am 23 years old. There is NO MAXIMUM life expectancy for your daughter. By saying that, your basically giving your daughter an experation date and thats wrong. Be glad shes her and live everyday to the fullest with her and remember, shes no different then anyone else. ↑ |
| Name: skokocinski | Date: Apr 13th, 2009 12:15 AM |
| Hi, My name is Samantha and My daughter has been in and out of hospitals with pneumonia for the last 12 months. She has had 6 documented cases of pneumonia and viral meningitis. Her doctor now wants to undergo cystic fibrosis testing. I am scared out of my mind. My insurance just canceled on me and are now giving me a hard time. My daughter will be 3 in a few weeks. Is it common for the CF to not be detected for this long? She looks so healthy, you would never know anything was wrong...even when she has pneumonia. She's on nebulizer treatements every 4 hours and anti-biotics. if anyone has advice or any input at all...let me know...feel free to email Skokocinski@gmail.com ↑ |
| Name: Lauren Meredith | Date: Apr 18th, 2009 11:41 PM |
| hey ive honestly never really met another person with cf im 14years old and the only one with it in the high school,middle school, and under grades with it so if anyone wanna talk message me @ lauren_meredith53@yahoo.com (prefers teenagers) can related to meh thats y. lol ↑ |
| Name: jack | Date: Apr 20th, 2009 10:32 PM |
| hello I have CF I am 44 years old. It has not always been easy. I have had ups and downs. but I keep going going going like a energizer bunny. and people with cf can take alickeing and keep on ticking if you will so dont lose hope.do your reserch sally so you can help her the more you know the more you can help her . exercise can be very important if she is able.ask your docters many questions.also the cystic fibrosis foundation is always looking for new and better ways to treat all of us with cf. take care you are in my thoughts jack ↑ |
| Name: mikaela | Date: Apr 30th, 2009 12:38 PM |
| i have cf and i would like to know more about it ↑ |
| Name: shaunagh | Date: May 2nd, 2009 5:35 PM |
| sally, i know your daughter has cystic fibrosis and it's hard to deal with sometimes, i have it too. But you can't think of her life as being a maximum of 24 years left. Life span is unfortunately restricted with cf but nobody knows how long each individual cf sufferer will live. Have faith, treatments and health care are improving. Cystic fibrosis is an ongoing battle that someday will surrender to us... meanwhile we just have to do our best with the cards we are dealt with. ↑ |
| Name: Stressed mom | Date: May 8th, 2009 1:48 PM |
I was wondering if an experienced mom could offer some advice to me on the Cystic Fibrosis matter. My son is supposed to take this sweat test to see if he has Cystic Fibrosis. I am scared about the tests and shocks?
He only has two symptoms and they are nasal polyps and very foul smelling stools that are offensive and has chronic constipation signs.... I think they are jumping the gun but now I have to live with what if?
Any advice is appreciated. ↑ |
| Name: Chris | Date: May 19th, 2009 3:46 PM |
| I was diagnosed at about 6 months of age. My parents were told that I had 10 years to live max. In sept I will turn 40! Dont believe the prognosis that the doctors give. A positive mental attitude goes a very long way towards quality of life. ↑ |
| Name: shell | Date: Jun 9th, 2009 4:57 PM |
| hi my son is 2 and was diagnosed with cf at 6 weeks old he spent 14months in hospital from birth had 22 operations on his bowels and intestines a common problem in cf babies we were told 3 times he would not live and today he started playschool so never give up hope and dont underestimate the strength and courage of these amazing children and dont believe all the doctors tell you the truth is they dont really know themselves stay strong and enjoy your children ↑ |
| Name: Deborah | Date: Jun 27th, 2009 10:12 AM |
I have a son that was diagnosed with CF at the age of 18 months. He is now 14 years old. He puts all of his energy into living as normal of a life as possible. He goes into high school this year and just signed up for the football team. He has played in Lacrosse for the past two years and before that played baseball and took martial arts classes. Having an active life really helps him to stay healthy and keep a positive attitude.
There is so much positive research and development happening through the Cystic Fibrosis Foundation. They've had so many breakthroughs since my son was diagnosed! We have been involved with the Great Strides walk for the past eight years, which is the Foundations primary means of raising funds for R & D...it's a great way to get involved.
There are two particular studies happening right now...VX-770 and VX-809...one is in Phase III and one is in Phase II...both of these medications are gene therapies that help the protein that causes CF to function properly...so while they do not cure the disease, they may facilitate normal protein function and nullify the effects of the disease.
Considering the fact that CF is an orphan disease that the the gene was only isolated like 20 years ago, it is remarkable the breakthroughs that have happened in that time.
Try to keep a positive attitude and stay connected to people that will support you and understand what you and your child live with. Get involved in helping to find treatments and hopefully one day a cure! ↑ |
| Name: ben | Date: Jun 28th, 2009 1:27 AM |
| my fiance suffers from this shity fucking ilness,we have 2 young gorgeous children, she is 29 now,and getting worse,they betta find a fucking cure soon, ↑ |
| Name: Josh ? | Date: Jun 28th, 2009 12:47 PM |
| Hi my name is josh , I have cystic fibrosis . It can be hard , but doing your treatment is worth it :) ↑ |
| Name: Ariel | Date: Jul 1st, 2009 8:56 AM |
| I am new to the cystic fibrosis community, unfortunatly, and i am trying to find chat rooms and sites that i can speak to others with CF, or parents with kids with Cf, I am kinda computer challanged so i need help. Does anyone have any tips for ↑ |
| Name: benlaidler | Date: Jul 4th, 2009 6:32 PM |
| there is a young girl called kerry from newcastle upon tyne, who is native to this once great country called england,and all her family lived here for thousends of years, her grandparents fought and could of of died in ww2, not just to devend ths country,HE FOUGHT FOR HIS FAMILY, HIS FUTURE GENERATIONS, FOR THERE SAFETY, SO THEY COULD LIVE IN PEACE, ,kerry has cf 29 with 2 children,on the lung transplant list, she is really ill, speaking to kerrys doctors,whats the other option i ask, IF SOME ONE COMES UP WITH 20 MILLION,AND 12 MONTH THEY COULD HAVE A CURE,SHE COULD SWALLOW A TABLET AND SHES CURED,what pissis me of is things like red nose day,they raise 40 or 50 million pound for third world people, which i agree they need help, BUT WHAT ABOUT OUR PEOPLE , WHAT ABOUT MY WIFE,WHY NOT HAVE RED NOSE CF DAY AM RAISE MONEY FOR THEM,ITS A DISGRASE,ITS TOTALLY WRONG,ME AND KERRY ARE SUPPOST TO WATCH THIS ON TV,RAISE MILLIONS FOR OTHER COUNTRYS, WHEN SHE IS SITTING THERE DYING,ITS FUCKING WRONG,MY CHILDREN COULD LOSE THER MAM SOON,EVERY OTHER COUNTRY, AMERICA , THEY FLOOD MONEY INTO CURES , WHATS THE FUCKS WRONG WITH THIS COUNTRY, MR BROWN IS A ARSEHOLE, fuck them anyway,kerry has something more special,she has which i belive very strongly,she has loved ones who have passed over,who look over and protect her,all we have and is the best thing is hope,good luck to you all, x x x ↑ |
| Name: Drew | Date: Jul 15th, 2009 10:15 PM |
Hi sally im Drew and im 20 years old. I have cystic fibrosis and am still very healthy. I havent been hospitalized since i was 16 months old. you are so right about trusting ur insticts because the same thing happened with my mom and me. they figured out i had it through a blood test which is apparently the only way. But only because my mom would accept that there was nothing wrong with me. before i was even a year old she had to take me to several different before one of them thought something might be wrong and recomended i get a sweat test. my moms instincts my have saved me. and as for the life expectancy i have a feeling the cure is just around the corner =)
my e mail is Drewstheforce@yahoo.com if u ever wanna message me.
p.s. yes i really like star wars! ↑ |
| Name: grace | Date: Aug 1st, 2009 8:51 AM |
hello
i was diagnosed at birth and i cant remember what they did to me so thankyou for telling everyone what they had to do! ↑ |
| Name: Francesca Miles | Date: Aug 16th, 2009 8:06 PM |
| Im 16 with CF, and this is the first time i have spoke out about it. I am the only one in my family with CF, and even though i know i have all the support from my family i feel so alone with it all. I am scared of the future, as i dont know what it will bring. My freinds are really supportive and keep me going. But i find every day just gets harder and harder. Can any1 help me or give me advise? You all seem to be so strong! ↑ |
| Name: Dave | Date: Sep 3rd, 2009 2:49 AM |
Life expectancy is number that to many people take literaly, sometimes I wonder why it is even used. 35 is the number I hear touted about today. To some it gives false hope because they have raised it into the 30's. Well, that is a long time, if a child is 5 they should have better teatments or a cure by the time he/she reaches 30. On the other hand it is like the exit sign at the end of the hallway. Either way there are many variables CF patients have no control over, some good, some bad.
The only thing a parent and patient can control is the patients personal therapys in combination with hospitalizations . These together will give the patient his/her best chance at living a fulfilling life. I am 48, diagnosed at six weeks old with CF. I had a Bi-Lateral Lung transplant two and one half years ago after twelve years on oxygen. Five years is the number given for Post Lung Transplant, I can remember when it was Two years, a lady in my hometown is twenty years post transplant with no rejection ever. I do what the doctors tell me, and inform them of all my activites, that is all I can do. Take each day for what it gives you. It is and was very hard, but don't set the alarm on the life expectancy clock. ↑ |
| Name: marco | Date: Sep 13th, 2009 8:54 PM |
| hello every body a have daudther with CF she has almost 4 years she is ok tanks to goD this is new for me ,, this change my life is very hard ,but we need keep woing not get up ,, good luck everey body god bless you..my imail is dark_shplendor@hotmail.com any thing can do i help you ok chao ↑ |
| Name: Kiig | Date: Oct 7th, 2009 2:07 PM |
| Name: amanda | Date: Oct 30th, 2009 7:37 PM |
| Im sorry but i cant believe you would put a life span on your child. Chrish everyday you have. ↑ |
| Name: ben&kerry | Date: Nov 21st, 2009 12:24 AM |
| listen to me ben, my fiance kerry who has give me 2 gorgeous kids, tottaly super special children, this girl has give life to my children, doctors, consultants, its impossible they said well she give me 2 gorgeous kids ,son and daughter,this miracle lady is called kerry from newcastle,suffers from cf,that horrible nasty disease,i just want to tell any one who has got this in ya family, my children 5 and 10 understand but kerry is 29 and on the transplant waiting list,am 30 super healthy ,nothing wrong with me, and i am fighting ,preying ,she gets new lungs ,but its fucking hard when she says ben a carnt get out of bed me chest is fucked,listen darling u stay there al take care of things,i know a lot about this disease any one want advice ring me 07925254445 need help let me help ↑ |
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