15 Things People Living With Cystic Fibrosis Want You To Know

1. It isn’t “just a bad cough”.

Instagram: @ktbutterfly

A persistent cough is a symptom of cystic fibrosis, but it’s so much more than that. A sticky mucus builds up on the lungs, and digestive organs are also affected by the mucus. This means that people with cystic fibrosis have difficulty processing food, and have to take enzymes to help them. They can pick up serious infections easily, and there are many more complications besides.

“Often, people with CF struggle to put on weight because they have trouble digesting food – particularly fatty foods. The condition can also lead to wider complications such as CF-related diabetes and organ damage.” – Dr Keith Brownlee, director of impact at the Cystic Fibrosis Trust

“It isn’t just a bad cough. Lungs are damaged, but there are so many more complications. Digestive organs are also restricted by mucus. Many sufferers would be malnourished due to pancreatic insufficiency if they didn’t take enzymes to help them digest food. Male sufferers are often infertile, it increases the chance of diabetes, can cause liver disease and bone diseases.” – Martha Lane

2. It’s a genetic disorder. And around 1 in 25 of the UK population carry the gene.

It's a genetic disorder. And around 1 in 25 of the UK population carry the gene.

Courtesy Charlotte Davies

“If two people with a copy of the faulty gene have a child, there is a 1 in 4 chance that their child will be born with cystic fibrosis. More than 2.5 million people in the UK carry the faulty gene, around 1 in 25 of the population, and there is currently no cure.” – Dr Keith Brownlee

3. There are other consequences too.

Instagram: @cf_foundation

“Virtually all men with cystic fibrosis are infertile. Women with cystic fibrosis are usually able to have children, but it can be more risky, especially if they are underweight.” – Dr Keith Brownlee

As well as taking medication daily, some people with cystic fibrosis see a physiotherapist to help with the mucus buildup.

“I cough so hard that I am often nearly sick and have permanent lung damage in my upper right lobe. I do breathing exercises and go to the gym as physio when I can fit it in around my energetic 2-year-old (I have the luxury of being able to skip a day of physio – even though I really shouldn’t – whereas most sufferers would find that completely detrimental to their health).

“I attend a specialist chest clinic once every 2-3 months (though this was monthly during my pregnancy) where my treatment and lung function is reviewed, I see a doctor, a physiotherapist, a dietitian, and a nursing team. My partner is a carrier of the recessive gene so there is a 50% chance of passing on the illness in its typical form to any child we may have. This makes trying for a family more complicated.” – Martha Lane

4. It’s not infectious.

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“You cannot catch it! I travel by public transport a lot and the amount of people who give me repulsive looks while I cough, or not-so-covertly lift their shirts to cover their mouths, is always noticeable to me.” – Martha Lane

5. It’s an invisible illness.

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“There is no difference in my outwardly facing appearance on the days I feel at my worst. How can it be a serious illness if you look fine?” – Michael Winehouse

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“I am extremely good at hiding my condition from new people and find it difficult to explain initially. People tend to lose their words when I explain I have had a double lung transplant at 25. It can be embarrassing when you want to make a good impression and they google CF and it comes up with words like ‘sticky’, ‘sputum’, ‘poo’. I once had a girl say to me, ‘So snot comes out of your mouth?’ I replied, ‘I guess so!’” – Poppy Roberts

6. And it’s incredibly lonely.

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“People with CF can pass potentially deadly bugs that, while harmless to most, could prove fatal to another with CF. For this reason, two people with CF can’t meet – making it an isolating condition.” – Dr Keith Brownlee

“We aren’t allowed to mix. This is due to the different bugs that we carry – we would actually put each other at risk. This is quite isolating and especially upsetting as so many people with the illness are children and young adults. To have friends who are going through similar struggles would be so helpful. I think the CF community are particularly vocal online for this very reason.” – Martha Lane

7. And diagnoses are sometimes had to come across.

And diagnoses are sometimes had to come across.

Courtesy Poppy Roberts

“The majority of my issues when I was young were digestive, which is slightly against the grain when it comes to CF, so it took over three years to get a formal diagnosis, which is a fairly long time when you have a very unhappy malnourished little boy.

“One doctor examined me one day, agreed with the suspicions of my parents and quickly arranged a sweat test, which proved them all right and CF was the result.” – Michael Winehouse

“I have had CF my whole life. I remember taking my Creon [an enzyme replacement drug] mixed with little pots of yoghurt in primary school; they recycled all the capsules to make an enormous owl and pussycat picture in the hallway. I was pleased I was the only one who had to take tablets in the class!” – Poppy Roberts

8. Cystic fibrosis affects every part of the day.

Instagram: @ktbutterfly

“Waking up an hour earlier than those without CF to take tablets, nebulisers, and recover from a cough-filled night’s sleep all before 8am. Tablets with everything I eat and trying to fit in a job on top of everything else is pretty tough going.

“Lots of coughing, phlegm, and poo if I’m entirely honest. It isn’t a sexy illness to have. Tablets, calories, nebulisers, exercise, calories, work, tablets, nebulisers, calories. Sleep.” – Michael Winehouse

9. And exercise is really important.

And exercise is really important.

Courtesy Sophie Holmes

“The importance of exercise is not realised. For me it keeps me well, lung function at or above 100%, and living live to the fullest – the correct combination of different types of fitness, nutrition, and rest with our medication. Everyone needs to be fully educated as to why it works and why it will keep you breathing and well, as I truly believe it is part of the key to combating CF especially while there is no cure.” – Sophie Holmes

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10. As is eating a ginormous number of calories.

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“Day to day I have to take up to 50 tablets plus digestive enzymes, two inhalers, two nebulisers, extra vitamins (as my body doesn’t absorb these from food very well!), as well as eat 3,000 calories to maintain my weight. Alongside this, I train in the gym, weights, and do a lot of high-intensity interval training to keep my lungs working properly.” – Sophie Holmes

11. You get organised pretty quickly.

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“It’s a nuisance in terms of remembering to take tablets precisely 12 hours apart so that they work effectively, which becomes harder than you think across time zones, wanting to sleep in, etc.” – Nick Talbut

12. And learn to know your own body.

Instagram: @ktoogie

“For me CF means to be constantly aware of my body and noticing if a chest infection is coming on or if I am about to have a hypoglycaemic attack, and being prepared for these events. Whether that means simply eating a few sweeties or going to stay at the hospital for two weeks, it’s always being prepared.” – Poppy Roberts

13. You can be diagnosed at any age.

Instagram: @lovetobreathe

“My CF story is a strange one. I was diagnosed just after my 21st birthday. All babies are screened for it now at around 10 days old. I was a relatively healthy child who was on sports teams, but I sounded like a smoker even at the age of 10.

“I had a hacking cough and would always get infections. I was given an inhaler but that didn’t do anything. I was given X-rays that didn’t really show much either. When I was in uni I started having digestive issues and became quite poorly and ended up in hospital with pancreatitis.

“This is a very strange condition for a 20-year-old as it normally affects alcoholics, drug users, and the elderly (and people with CF, but doctors didn’t know that was what I had at the time). Essentially my pancreas was attacking my liver and stomach – it was extremely painful. I had all sorts of tests, including nuclear testing on my gallbladder! They said the best thing to do would be to remove it.

“Immediately after the operation I was coughing more than I had in a long time and all the staff asked if I was a smoker. One nurse just happened to mention that my breathing tube had been covered in mucus when it was pulled out. I thought, That just cannot be right, so I went back to the GP. She said it didn’t sound good either and referred me to a chest clinic.

“The doctor I saw thought it might be cystic fibrosis due to the pancreatic involvement and ordered a sweat test. People with CF lose more salt in their sweat. My salt levels were high enough for a diagnosis and then I had blood tests to confirm the two mutated genes that I carry. One is the common delta-F508 and another is a much rarer gene. We got Joe, my partner, tested shortly after to see if he was a carrier and unfortunately he was.” – Martha Lane

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14. And everyone’s typical day is different.

Instagram: @loyalroyal_ee

“There is no typical day really as I have had two jobs lately: one leading an international organisation, as well as being a director for another, so I travel a lot globally. Recently I have had to train a lot for my Everest expedition.

“This can involve carrying up to 26kg – expedition rucksack and ankle weights – and a combination of running/walking up and down hills or many hundreds of flights of stairs. The weight is roughly equivalent to carrying 52 cans of beer, so it takes quite a lot out of you. On the more positive side it involves lots of eating to build muscle as well as fat reserves if possible!” – Nick Talbut

“I usually get up around 6am (unless I have any early-morning personal training clients!). I then make breakfast of either eggs or overnight soaked oats with some digestive tablets as I need these every time I eat. Then my medication regime starts because it’s better to just get it done (as even for me it can be a chore), so it’s the nebulisers followed by the two inhalers. But because I am competitive I have managed to get this down to around seven minutes as I want to make the most of my day and not spend it doing medication.

“I will then get ready for the day, which will include starting and or finishing the day with clients, my own training, tending to my horse, then usually prepping for the next day. Some days I may have a shoot or filming to be done or maybe include coffee with friends and of course making sure I get those 3,000 calories in.” – Sophie Holmes

15. And the best support you can give them is to be considerate.

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“I think I would like everybody to consider, things that are easy for them can be difficult for us. Simple things like walking or changing bedsheets can be tiring for someone with CF due to lack of oxygen and energy.

“This can also be said for academic achievements and work environment, as much of our time is taken up with treatments. When I was at university I had to work all summer as well, just to catch up with everybody else. We can achieve just as much as a healthy person, it just takes us a little extra time. We can excel when given positive support and patience by others.” – Poppy Roberts

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