Things you may not know about Cystic Fibrosis

You may know by now that Cystic Fibrosis affects the lungs. This is correct, but you should know that the disease is not just a lung disease. From my previous posts you may have realised that my liver and digestive system (thus, height and weight) are also affected quite badly.

The CF Trust are now working hard to promote the fact that CF affects a lot more than just the lungs, as even the NHS incorrectly classify it as a ‘lung disease’.

I have now been living with CF for 21 years, but every year it seems that I come across another new potential effect. So, along with reduced lung function, poor digestion and a damaged liver, there are still a whole range of problems that I have yet to encounter.

The aim of this blog post was to raise some more awareness about its lesser known effects. So here are some things that you probably, definitely, did not know about CF.

  • CF Related Diabetes – Around 50% of adults with CF will develop CFRD. People with CF have poor pancreatic function and need to take medication to help with digestion. Over time the pancreas may also fail to produce the hormones which regulate sugar levels, giving us a high chance of developing CF Related Diabetes. CFRD is tested using a glucose tolerance test which measures how well our body is regulating sugar. It is important to catch it before it develops fully, as if it progresses without treatment we may begin to lose weight and lung capacity. Like diabetes, CFRD is treated with insulin.

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  • Osteoporosis – People with CF are more at risk of developing bone disease, which can lead to Osteoporosis. This means we need regular scans to measure our bone mineral density. If it is too low we may need treatments to prevent bone disease from developing.
  • Arthritis – Up to 10% of people with CF may develop joint pain and arthritis. The symptoms often flare up during times of ill-health and infection.
  • Salty Skin – The gene defect which causes Cystic Fibrosis prevents normal transportation of salt around the body. When you sweat, salt carries the water to the surface of the skin and is them reabsorbed into cells. This doesn’t happen in a CF body so instead it sits on the skin surface and causes the skin to taste salty. When going on holiday, people with CF may need to take salt tablets to replace the salt that will be lost through sweating.

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  • Infertility – Mucus can be found all over the body in some with CF,  including the reproductive system. This can cause problems with male fertility as it can block the tubes which carry sperm and make it impossible to conceive. Infertility is less common in women with CF, but it can occur if they are underweight as this can cause irregular periods.
  • Effects of Antibiotics – CF patients need to take antibiotics everyday. Generally, they don’t cause any problems but there are a few which have can have side effects. An oral antibiotic, prescribed to fight a specific bug, can make skin more susceptible to sunlight. This means we may need to apply suncream to avoid burning, even in England! An intravenous antibiotic, which is prescribed for patients staying in hospital, can cause hearing problems. If this drug is being administered, we will need to attend extra hospital appointments for hearing tests.

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  • Cross infection – One of the most annoying things about having CF is that we can’t meet up with other people who have it. This is due to cross-infection, which is the risk of transferring bugs to each other if we are in the same environment. Bugs reduce our lung function and make clearing mucus a much bigger job and as we all grow different ones we need do what we can to prevent infecting each other. Luckily for us, the internet was invented and we can talk to each other online. That’s why you’ll find a big CF community on social networking sites like Facebook and Twitter.

 

You can read about these effects on the CF Trust website here and here. But if you take anything away from this post, please let it be that CF is not just a lung disease!

 

// Beth

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