Living with CF

Cystic fibrosis (CF) is a life-shortening inherited condition that slowly destroys the lungs and digestive system.
There are over 10,400 people living with the condition in the UK.
Over two million of us carry the faulty gene that causes CF, most without knowing it.
Each week, two people lose their lives to cystic fibrosis.
Living with CF means a daily burden of time-consuming physiotherapy and a vast intake of drugs.
The Cystic Fibrosis Trust is the only UK-wide charity dedicated to fighting for a life unlimited by cystic fibrosis for everyone affected by the condition.
When we started in 1964, 80% of those with CF would die before the age of 10.
Today there are more adults living with the condition than children, and half of those born with CF today are expected to live to 47.

But this is still unacceptable.
The Trust will not rest until cystic fibrosis no longer means a life-long struggle, and everyone living with the condition can look forward to a long, healthy life.

For further information contact:
Cystic Fibrosis Trust
One Aldgate, London, EC3N 1RE

Registered as a charity in England and Wales (1079049) and in Scotland (SC040196).
A company limited by guarantee, registered in England and Wales number 388213.
Registered office: 1 Aldgate, London, EC3N 1RE
www.cftrust.org.uk

 

SOPHIA – 7
I’m now 7 years old and will start year 3 in September. I absolutely love going to school. My favourite subject is inquiry where I learn lots of interesting facts about the world.
When I’m not in school I do a lot of sports to keep me well. I swim four times a week and belong to Chelsea and Westminster Swimming Club. I also do ballet and gymnastics, and I play tennis. Keeping active is very important for my health. I also have to spend quite a bit of time on my physiotherapy which means I miss out on time to just hang out and play with my friends. I wake up every morning at 6.45 for my first inhaler and one hour later my first physiotherapy session together with a second inhaler. When I come home from school I do a second physiotherapy session combined with a third inhaler.
I also have to take about 30 pills a day (and more when I’m not well). Despite all this hard work, my lung function has been declining. It’s really important everyone gets access to the new CF drugs to keep us healthier for longer. None of these drugs are a cure but they are a significant improvement. Please help us so we can invest in more research to find a cure!


AIDAN – 9
Hi I’m Aidan and I’ve just turned 9 years of age. My Dad has encouraged me to take up trampolining for physio and I go to a local club three times a week. I’m doing really well at the sport, becoming the Sussex champion for my age group. I recently competed at a regional level at the Birmingham arena representing the South East of England. It was exciting and daunting all at the same time. Trampolining has really helped me stay well and keep my chest clear although I have been in hospital twice since the last Ball. The first time I had a mucus plug in my lung and the second time my lungs were flooded with mucus. I’m fine now but I do find gaining weight really tricky despite my mum’s best efforts at feeding me up. She’s even started giving me chocolate eclairs at breakfast!
At a routine set of tests last year I was diagnosed as glucose intolerant and this year I’ve been told I’m developing Cystic Fibrosis Related Diabetes. Not great news as it means lots of needles and blood testing which I hate. I’ve got so much to do already it’s going to be lots more for me to do. I’m only 9 after all and having fun and playing with my friends is what I really want to do.
Please help us find a cure for cystic fibrosis.

 

MARY – 15
Hello, I’m Mary and I am now 15 years old! 4 years ago I was asked to write a little about myself for the 9th 65 roses ball and I think it is fair to say that quite a bit has changed since then! Last time I had just started secondary school and nervous to tell everyone about my CF, but now, I am in the midst of my GCSE’s and pretty much everyone knows about my condition.
Annoyingly, I have now been diagnosed with a lung infection called MAC (Mycobacterium Avium Complex) which can be very difficult to get rid of, and means I now have 3 nebulisers to fit in each day and will have to have regular x-rays of my chest.  I do not allow this to stop me doing anything as I have recently completed my silver DofE expedition and managed to cope with all my medication (however it was a bit of a faff!). Also, back in March, I performed in my dance school’s show which I enjoyed. Since the last ball I know there has been a lot of breakthroughs in CF research but not enough! Please donate to help give us the best chance of beating CF!

 

GRACE – 16
Hi, I’m Grace and I’m now 16 years old. I’m not going to lie, it’s been a tough year. I’ve had a lot of problems with blockages in my tummy. When it’s been bad, I’ve had to go into hospital. When it’s been good, I’ve had to put up with stomach aches and nausea. Fortunately, they got me out of hospital in time for my GCSEs with one day to spare. Don’t know how I’ll do because I’ve missed a third of the school year. I’m about to have surgery again and if that doesn’t work they’re going to fit me a stoma bag. I’m trying to stay positive but that’s getting harder. My big thing is running and swimming. I represented Tower Hamlets at the London Mini Marathon for the fifth time this year, but I’ve lost a lot of pace. I’ve set myself a target for next year. If they can sort my tummy I’m going to run the Hackney Half Marathon two weeks after my 17th birthday. I’ll be the youngest on the course. If that’s too soon, then Plan B is to do the North Norfolk Triathlon later in the year – one mile sea swim, 40km bike ride and a 10k run. I’m determined to stay fit so I can benefit from the new drugs being developed with support from the CF Trust and generous people like you. But it’s tough. 


HUGH – 22
Since the last ball, I have almost completed my degree, with my final year just about to get underway. I have just finished a placement year in industry – getting a taste of how working life will be after graduation and how to balance a full time job with treatment and looking after myself which is yet another leap from university life.  Hospital admissions were every 2-3 months until, in addition to placements, I really got into the gym properly, spending an average of an hour and a half a day there on top of the standard physio and nebs I need to do.  This was a lot to fit into the days but worked well as I tended to have Wednesdays off to keep on-top of the tiredness and getting run down.  However due to the gym and effort I was putting in, for the first time in longer than I can remember my admission rate went from every 2/3 months to a gap of 11 months! The longest gap I have ever had, which was really motivating and showed this regime was working. Within the year I also became a registered freelancer and am in the process of launching a creative platform company which is picking up momentum and is very exciting.  As a result of working hard all year both work wise and health wise, I was then able to do some traveling, spending 3 weeks in Thailand and a few weeks in Portugal and Malta, which was fantastic. Now I am back from my travels it is time to get back into work and the gym and to prepare for my final year of university before I am released into the world for good!

 

AMANDA – 30

 

 

BEN – 35
The last few years have brought a lot of changes for me.  I met my now-wife while on holiday in Rome in January 2015, she’s American which meant lots of trips to the US for the 18 months that followed.  I started coughing up blood on my most recent trip to the States, which resulted in a week-long hospital stay, two weeks of IVs and a bill for $50,000 – thank God for the NHS and travel insurance!  We’re now married and she lives over here, which thankfully means an end to all the flying, especially as I’m now not allowed to fly for health reasons.  I had a serious allergic reaction to a drug which meant a trip to A&E towards the end of last year, but I’ve managed to claw my way back to pre-reaction lung function levels now fortunately.  My lung function is still not great though and combined with a resistance to most of the CF drugs available, that meant I took the decision to go on the waiting list for a double lung transplant at the beginning of this year.  I’ve been told that being tall should make me suitable for a wide range of lungs; it’s been 5 months so far, so it’s a bit of a waiting game right now. I currently spend around 5 hours each day doing physio, which a transplant should reduce massively so there’s a hope that I could get a huge amount of time back as well as the ability to travel again.  Fingers crossed!

 

RACHEL – 36

 

 

RICHARD – 41
My life has changed quite a lot in the past 4 years with the arrival of my son. He is such an amazing little person with a big personality and a fondness for saying no but not taking any notice when we say it! Having a child is quite tiring whilst living with CF as the morning lie ins are pretty much a thing of the past and as he is walking he doesn’t stop moving, he is like an energiser bunny. Luckily he still naps so when he does I try to as well. My health overall has been ok with a couple of hiccups along the way but I can’t really complain as I am still able to do most of things I enjoy most of the time. I am still playing football and consider myself more of a strategic player than a runner, so I pass a lot and hang around the goal area to take the glory of scoring. My aim this year is to go to the gym more and try and get fitter if I can and tone up but it will involve more eating which my wife is very envious of. My wife goes to the gym a lot and eats sensibly whereas I go to the gym and will eat half a tub of ice cream for dessert to keep up the calories, you have got to love the CF ‘diet’. I have recently moved roles within Exeter University where I work and they have been very supportive of my illness which makes a big difference to my health, I have moved out of HR and into Student employability and am looking forward to doing something new and creative.
Thank you so much for supporting the CF Trust and I hope you have a wonderful evening at the Sixty Five Roses Bal