Conditions
Cystic Fibrosis
Cystic Fibrosis is a chronic, life threatening disease that sees the internal organs (particularly the lungs) become clogged with mucus. Whilst an unaffected body produces a constant flow of mucus to trap bacteria in CF sufferers this mucus is gloopy and too thick which is what causes problems. Other symptoms associated with CF include osteoporosis, clubbed toes/fingers, recurrent chest infections, poor growth, constipation, fertility problems and sometimes liver disease and diabetes. Cystic Fibrosis is genetic and the 8000 sufferers in the UK make it the most common inherited disease in this country. Some people may be carries of the CF gene without knowing it but tests are available for those with a family history of CF and can be useful when considering making plans to have a family. For a newborn to develop CF both of their parents must carry the CF gene which means there is a one in four chance of their child having CF. The life expectancy for a sufferer is about 35 years. Whilst there is no cure for cystic fibrosis there are treatments available to keep sufferers as healthy as possible. Treatments typically involve a combination of frequent medication and physiotherapy which should allow a CF sufferer to live as long, happy and unaffected life as possible.
For more information:
Cystic Fibrosis Trust
Cystic Fibrosis at Patient.co.uk
Cystic Fibrosis Foundation
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Hi I am a 38 year old male who has had a persistent chronic cough for the last 8 years, the doctor diagnosed this as cough variant asthma. I have thick mucus that feels like it is sticking in my throat, and I have to cough hard to clear it. However I have always thought that I have mild cystic fibrosis. Is it possble to only display cf symptons later in life? Please excuse my ignorance but I do not know much about this illness. Having a cough for 8 years is definately not normal, and it gets so bad sometimes that I can not talk without hacking up flem, after 8 years of this I get pretty fed up sometimes. I dont want to just live with it! More recently I have developed a epididymal cyst and am experiencing stomach cramps and bloating. The cyst is painful, but I have been advised just to take painkillers. Any help/ advice would be appreciated.
Hi im stacey, i'm soon to be 21 i was diagnosed with CF at 6weeks old, the hospital originally accused my mom of not feeding me properly as i kept loosing weight and as it seemed there was no reason. I didnt take my medication when i was younger i didnt think there was anything wrong with me, i met my partner at 16 (who is my rock)and also lost my mom which made me grow up and start taking my medication, i am back in hospital again at the min as i caught a cold i couldn't shake off my chest, colds suck lol. my CF is quite well controlled now, my main problem is acid reflux, i suffer with it all day long with no relief, i am awaiting an operation to wrap muscle around my esophagus to stop it coming back up, hopefully that will work. i have had two portacaths although my second one is difficult for me to access myself as it is under my armpit, it also causes me palpitations as the line on the inside is too long and irritates my heart if i lay on my side, i wasn't happy with my surgeon when i woke up as i had told him where i wanted it. one of my main concerns is i really want children, but as you'l be aware it can be difficult due to infertillity, and having to be healthy for so long before hand, i know that it is possible for some CF women to concieve, i worry that i wont be able to but then on the other hand im scared to have the tests to find out if i am fertile because of what the outcome could be, if anyone who has had CF from birth or young and has managed to have children i would apreciate some feedback of how it was please. As for the everyone with CF, keep your chin up we'r not the worst off, dont let it drag you down, live life to the full. be happy, maybe one day we'l be lucky enough to work out a cure :) xxx
my daughter has cf she 17 and having her first baby she 31 weeks now and hasnt had to even go into hospital once while pregnant so it is possible to get pregnant and she married looking after a husband she is getting tired now and needs to eat a bit more as she hasnt gained any weight but doing good speck to your cf nurse about it and i wish u good luck
my mom has Cystic fibrosis, & shes had 5 children (: only one of my borthers/sisters have CF, i suppose we were all lucky... i wish you luck (:
my mum was told she had fibrosis afew months ago she is 69, the doc tried 2 explain to her wot is was but she is confused like we all r as she was healthy as a child and even growin up mum was fine, for years she was being treated for asthma and bronchitis, her coughin and breathin has got a lot worse they said with her last xray that its showing up,
Hi, im 20 and have just been diagnosed with cf, it is quite confusing to be told when your an adult but the consultant I see is a leading researcher in cf and he said this was becoming more and more common that people up to the age of 70 were being diagnosed with the condition and that it is no where near as simplistic as the discription above (not saying at all that the discription is wrong) as you can see from ypu mums case that it is not quite as life threatening as it is initially stated as she has so far reached a fantastic age of 69 which is bloody well going for someone with a chronic illness :) hope she is well
Hey my name is lisa and im 19 years old. I was diagnosed with CF when i was 5 1/2 months. I have a portacath,gastrostomy,in hospital roughly 6times a year for iv's. Was on transplant list when i was 4 years old but got taken off when i was 8 and once had a false call. Doctors say it is very rare to ever improve but doctors are considering putting me back on the waiting list as they are not happy with my lung function tests. I also have to have insulin sometimes when i have a bad infection. Cf doesnt stop me doing what a normal teenager does, i go out clubbing, go to football matches and live on my own now. People ask how i cope with it...i dont say i actually cope with it i just get on with it. I recently got a tattoo of the lyrics from the song you'll never walk alone and my tatto reads "When you walk through a storm, hold your head up high" and that pretty much sums up CF for me. Even though things get tough at times you dont let that stop you from keeping going, you get over they hurdles and continue living your life. Everyone who has CF i believe has the same outlook on life and it makes us who we are :) Lisa p.s Stay strong
im 24 this april :) the eldest of 5. anywayz,i have CF too,was diagnosed at 2 days old as well as that my youngest sister also has CF and she is 16. my sister is healthy touchwood,not been as bad as me. i hav a port,we both take inssulin with our nightly feeds via a nasogatric tube(put it down every night),lots of medz,i take a neb morn and nite,steroids since i was 10yrs and still on thm. we both get on with our daily routine.yeah,been a lot of tough times but you get through it and live life to the full. just been havin a real tough time from my dr lately coz i got amrried 2yrs now,and just being negative towards me all the time but im sure i can handle anything thts thrown at me..iv managed so far but having CF shouldnt stop us from achieving the best that we can so always dream those dreams and hopefully one day we will go over the rainbow!:)
Hi Deborah. I always knew I was 'different' and that 'something was wrong' so to be truthful it wasn't a huge issue when they told me I was CF. In some ways it was a great weight off my shoulders and I found it put an awful lot of life's problems into perspective. I mean you find out that you have a degnerative disease that currently can't be cured so you have no choice but to get on with it and that makes most other problems seem pretty unimportant. You also realise that you have to live your life not anybody elses and do what you want in life. If other peole don't like it or don't approve, that's their problem. Have fun and keep taking the medicines!!
in reply 2 Derek :) wen i was younger i was alot sicker an i never understood why, until i started administerin my own tablets and al, thats wen i understood what CF was and why people started at me when i was coughn! iv had CF related Diabetes for the past 5 years aswel, so i have to fit in my insulin injections twice a day an do my blood suger, i can just about cope, i really dont know how everybody else does. i hope everythings ok with you an dont stop believin there might be i cure noone nos x
My daughter is 3years old... has had chronic bowel problems since birth. (She had a Colidocal Cyst removed from her liver at 5 months which had 3/4 pint of fluid in!) She is so bright and intelligent but has really struggled with toilet training. She has always coughed up this thick gloopy, white mucus and was put on antibiotics from being approx 12 months. Sweat test came back negative. Consultant stopped antibiotics in Jan, thick mucus started again... tested it for cultures came back clear now they want to test for CF again. Help and advice please!!
Sorry to hear about your Daughter, it must be such a worry for you. Suffering with C.F. myself, you usually get horrible yellow to green coloured sticky phelgm, it's rarely white, well, from my experience anyway! I've always thought that white mucus is good, & not infected, but I'll leave the diagnosis up to the medical professionals! Let's hope the tests come back negative for C.F. & you find out what is wrong with your Daughter, so that she can be offered treatment, if required, very soon .. I'll keep my fingers crossed for you, your Daughter & your Family ... :+)
Hi i had two sweat tests one was negative the last one posative. im 42 this year i hope your daughter is non Cf but i guess shes been so unwell you need answers. sputum maybe wouldnt show bugs so young? bowel stool is normaly sent away im sure ? i hope she picks up soon. avoid dairy food it makes me much worse! well i do have a little now and then..
Hi im called joanna and im 14yrs nearly 15 and i have cf. I was diagnosed ever since i was a baby. You could say iv'e had everything cf could throw at me. I had constant intravenous antibiotics (i was on them for more than half a year at a time), nebulisers, a port-a-cath (cos i needed so many iv's) gastrostomy, tablets and a couple of years ago i needed oxygen 24/7. So i had a massive wire that went all round my house. And portable oxygen cylinders. I also had a nippy ventalator for sleeping at night. Plus i grew a nasty bug called capacia so i couldn't mix either! But last august i had my double lung transplant - i had 2 false alarms though but it was 3rd time lucky for me. Now i don't need hardly anything only tablets! its so nice being able to breath again and not get out of breath so fast. Plus no more sticky horrible mucus!!! And they took my port out aswell when i had my transplant and hopefully this month there taking my gastrosomy out.The only thing is i lost a lot of my white blood cells so i pick up colds easily luckily ive only had 2 bad one's where i needed to go to hospital. one was actually this month. So they gave me injections to boost it- they hurt but now its gone back up so hopefully it will stay up! Plus ive gone diabetic so i need insulin jabs but i can still have all my fav things to eat and drink so aswell as counting how much fat there is also now also count carbs. But apart from that life is so much better im really greatful i had my transplant. So i never gave up fighting and neither should anyone else i know its hard but doing physio and taking tablets and everything else helps so you have to do it for your health! I did and combined with my transplant im as fit as fiddle. So don't give up hope - things do get better!:):)
hey joanna i am lauren i also have cystic fibrosis and i have just turned 14 i have had nearly all off the things that you have mentioned apart from the transplant and the oxygen but, i am really happy for you and it's such a shame that other cystic fibrosis patients can't meet up beecause they carry different bugs. i'd love to meet someone just like me! i know how hard it is and people don't realise i now know from someone who's had that experience that it is very important to have all of my medicines and nebulizers properly.thankyou i was only diagnosed with it when i was four so that did'nt help.
Brilliant news for you im so glad, stay well xx ps Im Cf to
Well time has passed since i last wrote nothing much has changed - apart from now i dont take insulin anymore which is a plus:) if anyone wants to ask mke something dont hesitate to ask me :D
I'm 22 and have CF. I have a disabled blue badge so I can park nearer to shop enterances. I'm always getting strange looks. If looks could kill, I'd be long gone. I wish people would have the courage to ask me why I'm parking in a blue badge space rather than giving me the evils! I could then tell them about my CF. I'm always being tutted at for coughing in public too despite the fact I fully cover my mouth! I'm glad Gemma went on the show to promote CF. Hopefully a lot of people saw it! Well done Gemma!
I was diagnosed with C.F. when I was 18 months old & I've just turned 40. It's so important to keep up with ALL your physio regime, & ESSENTIAL if you want to live, & enjoy life to the full. In my late 20's I got C.F. related diabetes, which was a massive shock, & yes .. WHY ME? I eventually came to terms with it, you have to, you've got no choice, but when you work hard & tell your Diabetic Nurse you've achieved a hbA1c of 6.5, you can smile proudly & give yourself a 'pat on the back'! Unfortunately, there's no getting away from our C.F. treatments & insulin injections, same regime everyday, 365 days a year, but there's always somebody less fortunate than us .... KEEP SMILING, KEEP FIGHTING, KEEP POSITIVE ... :+)
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