What is cystic fibrosis, exactly?

What is cystic fibrosis, exactly?

Now that’s a question. Cystic fibrosis is… Well a lot of different things to a lot of different people. Nearly eleven thousand in the UK and in the UK each week two people die from CF and five more babies are born with it, which probably means a lot of you are watching this in search of answers to that big question. So, let’s get started. Cystic fibrosis is about genetics, you can’t catch it. But if both your parents have the CF gene, there’s a one in four chance you’ll be born with the condition. About one in twenty five people carry the gene and most doesn’t even know it. And I should say at the start, there’s currently no getting rid of it. All sounds a bit gloomy, right? But whilst there’s no cure, a lovely life is still possible. Just look at me! You see, I have CF. So I think I’m a good person to tell you a little bit more about it. Cystic fibrosis is caused by a faulty gene, that disrupts the movement of salt and water in the bodies cells, making the mucus and people with CF thicker and sticker. This sticky mucus causes problems, mainly in the lungs and digestive system but also affects other parts of the body too. It’s not nice. The small airways in the lungs can get clogged up with this mucus, causing infections and over time damage to the lungs. So what does all that mean for everyday life? Well, here are some of the symptoms. Frequent chest infections, severe or prolonged coughs. Wheezing or shortness of breath. Abnormal bowel movements, difficulty gaining weight and for most men infertility. There’s also the issue of never being able to meet up with anyone else with CF. Basically we can make each other unwell
because of the bugs and infections that get transmitted between people with the condition. For better or worse CF is a part of me. It may be an unhealthy relationship but there are a lot of daily treatments to tackle cystic fibrosis effectively which can make our union that bit more harmonious. A whole host of antibiotics to fight infections in my lungs, they’re not all that colourful, but you get the idea. Physiotherapy to help shift the mucus that builds up around my organs. Enzyme capsules to take with food. They’re really not that hard to swallow. And talking of food, we need a special high fat diet to make sure our bodies get all the nutrients that it needs. And more drugs to thin that sticky mucus. People with CF sometimes need to take over 40 tablets a day. It’s a burden for sure.
But it’s the preferred option. If conventional treatments no longer work, a lung transplant might be needed. Cystic fibrosis presents daily compromises and challenges, but with careful management and the right treatment people with CF can lead full and happy lives. Work, travel, family, it’s all possible. Recent figures suggest that half the people with CF will live past their forty seventh birthday. But it’s also thought that a baby born today with cystic fibrosis could live longer, as life expectancy continues to increase with
the amazing advances in treatment and care. So, what is cystic fibrosis? It’s a serious condition, but one that an army of people out there are very serious about beating, for good.

43 Replies to “What is cystic fibrosis, exactly?”

  1. I have Cystic Fibrosis and this video is relly good. Thankyou for that. I eat not to mutch,but I know I must eat but it is for me so hard. I have for 1 year lung problems and I dont like it.

  2. Excellent video Charles…. well done! I know a 57 year old with CF. She still has same lungs (although not perfect) and she's doing fine. "Life does not have to be perfect to be wonderful…"

  3. my best friend has CF and her little sister does aswell, they meet face to face (well they live together) and they don't get really unwell, why Is this

  4. Great video. Till this day i have never heard of this condition. But i went on a birthday and donate money for people with this condition…

  5. As someone with cystic fibrosis, i agree with pretty much everything in this. I have to take lots of tablets, do plenty of treatments, and have to eat lots of fat and i'm still pretty skinny

  6. I just turned 13 years old and have had CF since I was born. It is hard since I'm the only person In my whole entire school who has it. When I take my enzyme tablets , and my nebulisers, people look at me weird and ask alot of questions which make me uncomfortable. I've been watching alot of vidoes about how people deal with CF. It makes me cry all the time, and it has given me depression. I'm always praying to God that I don't die so young. It's scary to say and think, "That's how i may die." Because no one wants to know how they're gonna die. But thankyou for making the video, (Its very late but oh well)! It has made me feel alot better about it. Although It is still in my life, I hope it will make me feel less insecure about a disorder I should be proud of for fighting.

  7. So it makes your mucus thicker. Specifically it effects a gene that encodes an ion channel used in mucus membranes as well as sweat glands and the creation of some digestive fluids.

    The effect, as he discussed, is thicker mucus, and a deficiency in digestive enzymes. (This is from a quick google search, not a thorough investigation).

  8. Gosh your so cute ๐Ÿ™‚ I know that's silly but hard to date when you have cf, so ya,… You're really sexy and I hope you know I was born with cf and poverty so um,.. You truly inspire me to keep going ๐Ÿ˜Š sorry I'm emo ๐Ÿ’‹ but you keep me strong

  9. My cousin has CF and he is currently at the hospital. I really hope he can get better ๐Ÿ˜ฅ

  10. Hi! I hope you are doing well. I am a student interested in researching CF, and there are some questions I have:

    1) I have read that the mutation in the CFTR receptor causes secretions without water which causes mucous to build up and the secretions to be thick. Apparently this can result in an immune response as well, even in the absence of infections with neutrophils being the key player. In the absence of an infection, what role do neutrophils have in exacerbating CF?

    2) I notice that CF patients in general have lower airway/pulmonary obstruction as well as upper airway obstruction. Are there any specific characteristics to upper airway mucous secretions that make it different from lower airway?

    Any guidance would be appreciated

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