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Cystic Fibrosis is the UK's most common life-threatening, inherited disease and affects more than 7500 babies, children and young adults. Symptoms can include poor weight gain, troublesome coughs, repeated chest infections, salty sweat and abnormal stools. Cystic Fibrosis is a genetic disease that affects a number of organs in the body (especially the lungs and pancreas) by clogging them with thick, sticky mucus. At present there is no cure for CF, but the faulty gene has been identified and doctors and scientists are working to find ways of repairing or replacing it. One of the main objectives of the CF Trust is to fund this work. People with CF are living longer than ever before. Until the 1930s, the life expectancy of a baby with CF was only a few months. Today the average life expectancy for someone with CF is around 31 years. I would say that CF is a condition that affects every aspect of your life. It can affect your lungs, liver, pancreas, joints, sinuses, and even fingernails. But in real terms, for me this means: I know I have to wake up the next day facing vitamins, minerals, antibiotics and enzymes, which means over 100 tablets a day. I know I'm going to have to spend hours in my day doing physio and coughing up copious amounts of sputum. I know I'm going to have to spend hours doing nebulisers or puffers to fight infection, thin down mucus and open airways, just so I can breathe. I know I'm going to have to drink high calorie milkshakes which make me want to throw up, just so my body has some energy to fight with, even though I know no matter how hard i try, I'm always going to need to put more weight on. I know I'm going to have to inject my self maybe 6 times to keep my diabetes under control. I don't know whether tomorrow I'll be able to walk because my joints are too painful. I don't know whether my stomach muscles are going to hurt at the end of the day because of all the coughing. I don't know if I'll have enough breath to have a shower, or play with my nephew, or do anything other than sleep. I don't know if tomorrow I'll have to turn down an invite from a friend, because yet again 'I'm sorry, I can't, I'm not well enough'. I don't know if I'll ever be able to have kids or a place of my own. And I don't know if tomorrow I'm going to get a call to have a double lung transplant, which I know I may not wake up from. But I do know that at least it makes you appreciate life, and live it to the full without wasting any time, which is certainly a life worth living. ~ Chloe |