| 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. ↑ |
| Name: kDraGon | Date: Dec 31st, 2011 10:25 PM |
| Name: emma | Date: Jan 10th, 2012 12:14 PM |
| hi there i have a little boy who is nearly 6 yrs old . he was diagonised with c.f at 1 yr old as the heal prick test did nt aknowledge it. at birth. i was devestated when i found out but am learning to cope with it. my little boy gets so aggresive with doing his physio and he gets me so upset. does anyone else have the same problem and have any ideas to make it better as im trying everything to make it fun but its not working. please if anyone knows what im going through and has any ideas please help. just be nice to get in contact and talk to someone who knows what im going through. my email is [email protected]. ↑ |
| Name: leah | Date: Jan 16th, 2012 3:10 PM |
| [email protected] , i am a 18 year old cystic fibrosis suffer. any questions any want to ask im here if you want to talk :) ↑ |
| Name: Katie | Date: Feb 16th, 2012 5:48 AM |
| My daughter has those symptoms to she doesn't not gain weight she is in the 10th percentile for her age and is constantly having respitory problems she has had pneumonia 3 times and constant bronchitis n sinus infections what should I do? ↑ |
| Name: kathleen bialke | Date: Apr 28th, 2012 4:36 AM |
| dont count the years by the time she reaches 24 thats a long time their could be a cure my daughter was diagnosed in 1978 and in those days the average age was 18 to 2o. now its 40 plus they only knew 4 defective genes and now they can name 1000s i was one of the mothers who saw the vest and the dr who designed made it was my daughters doctor for 18 years their is so much hope now god bless ↑ |
| Name: Kathy | Date: May 14th, 2012 6:20 PM |
Hi I am going through the same thing with my son who is six and were worried sick.
My son had pnueomia away back when he was three and a right plueral effusion.
He has since been diagnosed as being astmatic but he is currently on antibiotics constantly for chest infections. He has had a bronoscopy done only to find a bacteria known as the common flu.
His medical team now feel that he has CF but no one in our family have it nor do I or my partner at least not knowingly. Any advise would be great we are now waiting for a CT scan of his chest and a sweat test. Please Help ↑ |
| Name: Helene | Date: May 24th, 2012 4:38 AM |
| Hey Sally My son is now 19 and a half, every year gets harder as he is in and out of the hospital. I dont know how but you just learn to deal and be strong day by day. I find talking and esecially talking to someone that can relate really helps. always here if you need someone to talk too. i have years of experience and understanding that even doctors dont understand. You can email me [email protected] at anytime ↑ |
| Name: Helene | Date: May 24th, 2012 4:44 AM |
| Too anyone that just needs to talk i am here and willing to listen and answer any questions i can. I dont get on here much but feel free to email me and i will get back to you. Best thing is talking its something you never get over just learn to live with and take everyday for wat its worth. my email is Helene_Hedman @hotmail.com I know what it was like at first and nobody would talk to me. Keep strong and enjoy every moment. always here to share with anyone. ↑ |
| Name: Thu Trang | Date: Jun 25th, 2012 7:04 AM |
| Mua Báu Vât CF Vinh Viên Tång [ FOX & GP ] Tai Web : MuaBauVat.VN ↑ |
| Name: rebecca | Date: Jul 6th, 2012 9:08 PM |
| Name: cheyenne | Date: Jul 7th, 2012 12:15 AM |
| hey i have a britger with cerebal palsy his name is dalton. He cant talk or walk and is in a wheelchair ↑ |
| Name: Tj | Date: Aug 28th, 2012 1:35 AM |
| I am 31 and have cystic fibrosis. I am physically active and keep up with everyone I play sports with. I fight daily to keep my weight up but have a great life. Form a daily routine of medications and treatment and instill a positive attitude in doing these things and she will carry these habits through life. ↑ |
| Name: Stephanie | Date: Sep 18th, 2012 10:39 PM |
| Does anyone have any experience with Dr. Nichols at the National Jewish Center in Denver Colorado? ↑ |
| Name: tommy-lee | Date: Sep 21st, 2012 9:31 AM |
| im a 6 yr old boy with cf and i dont like it but it doesnt stop me doing anything that i love doing. i do gymnastics and napa ( northen academy of performing arts) the exercise and singing helps to strenghen my lungs ↑ |
| Name: Wendi | Date: Nov 25th, 2012 7:42 AM |
I am a 45 Year Old Women... My mom Had Cystic Fibrosis. She lived until the age of 45. She died 20 years ago.....I am her natural born child... When I was born, there were three of us in the world (3 babies born to CF parents) I have 2 Boys now...15 and 21... they do not have CF. Why did she live so long with this disease, 20 years ago... to the age of 45? Outside the Box medicine and an eternal hope.... Do whatever is out there... try it.... we traveled and did experimental drugs and treatments... and it extended her life.....
There was never a day that we did not laugh...
It's your life... live it like it was the last... the rest of the world wish they could.... and to hell with what anyone says or thinks... be your own person.... do what you want to do.... you may live a few years or many... we are all in the same boat...find what you love... and be grateful and gracious.... Just because you have CF does not mean you are have the right to doom and gloom... come on now, had she thought that, I wouldn't be here... and my boys wouldn't be here.... move along....don't let it encompass you..... be you... not he disease.... ↑ |
| Name: Natasha | Date: Dec 14th, 2012 9:34 PM |
| Hey my name is Natasha, I have CF and im 14. I was diagnosed at 2 months old. and I was told I WOULDNT live past 10 but im really healthy now, dont listin to the doctors about life expectency all you can do is live everyday like its the last happy and not regretful, atleast thats what I do(: if you ever need to talk or have questions email me at. [email protected] ↑ |
| Name: printer | Date: Dec 31st, 2012 5:01 PM |
Sally:
I have cystic fibrosis and I'm 72 years old. I've been married for 50 years. ↑ |
| Name: CF Patient | Date: Mar 9th, 2013 10:30 PM |
There is no limit on how long a CF patient can live.
Currently, the MEAN life expectancy is 37 - that means half of patients are under 37 and half are over 37. I know CF patients in their 50s, 60s, 70s, so your daughter does not necessarily have an expiration date stamped on her.
Getting on top of infections is the #1 priority. Keeping weight on is also important. Lastly, you cannot compare one CF patient with another - we are all different.
By the way, I am 41 and although I am in the hospital every 6 months, I have had a nice life - graduated college, got married, worked a number of years. Life is difficult, but not impossible at the moment.
Good luck. There's a lot to learn, and I wish your daughter a happy, healthy life. Take care. ↑ |
| Name: steffie | Date: Mar 21st, 2013 9:53 AM |
| im 22 and my daughter was diagnosed at 4 weeks by the heal prick shes nearly five months now she takes lots of vitamins and anitibiotics and creon and i do physio on her twice a day but she is a smiley happy baby gigglin and having her tantrums.. just like any other .. its scary not nowing whats coming in the future but im just glad we have one... i disagree with putting a life span on it .. things happen everyday u cud walk out on the road and get knocked down if her having cf has doe anything it makes me appreciate her so much more. im blessed xxxxx ↑ |
| Name: Chris lipscombe | Date: Apr 7th, 2013 9:19 PM |
| Hi I'm chris 19 , I have CF just wanted to chat with someone else who has it , never really have spoken to someone else with it , it would e interesting to see what it is like I'm different ways , add me on Facebook :) best advice I give with people with cf and without it live your life to the max don't let anything get in your way guys life is what you make it ! ↑ |
| Name: Casey | Date: May 4th, 2013 5:32 AM |
| CF is practically my life you can say and so on with everyone else who has it. The thing that's sad is that we don't yet when there will be a cure. Taking enzymes everyday can be a struggle i get how we are different and they we are go though our struggles with cf. i believe that if you want to talk about it and you feel the need to just talk let it out because really no one does know what its like to be in your shoes and how you take cf. Cf has been a huge impact in my life. Getting on my treatment is a way to make me motivated and waiting for the cure so i know i'm ready for when it comes. Thanks and hope you get what i mean when it comes to these situation and how some of us feel having cf and how we need to let our feelings out with out cf brothers and sisters i so call it since we all have something in common and related to cf. Thanks again! ↑ |
| Name: Louan | Date: May 30th, 2013 8:25 PM |
| My daughter will be 2 in August and also has CF lately we are having the hardest time getting her to eat anything does anyone have any advice? ↑ |
| Name: Claire | Date: Jan 28th, 2014 9:29 PM |
Hi Iam 37 and have cf. I've lead a normal as possible life in and out of hospital for treatment and different medications added here and there. I have a amazing 6 year old and am currently on the transplant list. I grew up by as soon as I felt unwell I was straight to the docs for oral antibiotics then of they dosn'tdo much straight for iv treatment this always worked well for me. Maintaining the support of my partner wasn't he decided once I was on the transplant list to leave.
Cf is easy to cope with the break down of the relationship wasn't.
There is so much new treatments around now and the out look for cf is much better as long as you let your children grow up seeing cf as a part of them and not let it run their life and keep them active and let them lead a normal life as possible they will do well.
If anyone would like to chat or ask anything please do :) ↑ |
| Name: ben | Date: Feb 1st, 2014 11:03 PM |
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