Additional symptoms of cystic fibrosis

There are many additional symptoms associated with cystic fibrosis that people might not be aware of. Find out about the lesser-known symptoms of CF and how to recognise them.

People with cystic fibrosis (CF) face many symptoms as a result of the condition and the medications required to treat it. Many of those symptoms affect the lungsdigestive systembonesliver and fertility. However, there are also lesser-known symptoms affecting other parts of the body to look out for.

  • Kidney and hearing complications in cystic fibrosis

    People with cystic fibrosis often require a substantial amount of aminoglycoside antibiotics, putting them at risk of nephrotoxicity and ototoxicity, or toxicity to kidneys and hearing. Aminoglycosides, which are broad-spectrum antibacterial antibiotics such as tobramycin, are used extensively in the treatment of many bacterial infections.

    There is a test called the MT-RNR1 test that looks at your DNA to check if you have a variant (mutation) in the MT-RNR1 gene that means you are at an increased risk of experiencing hearing loss with aminoglycoside antibiotics. The MT-RNR1 test is useful for people with long-term conditions, such as CF, which mean they are likely to need aminoglycoside antibiotics in the future. Find out more in our factsheet about MT-RNR1 testing for increased risk of aminoglycoside hearing loss.

  • Sinusitis and cystic fibrosis

    Both acute and chronic sinusitis are common in people with cystic fibrosis. It is caused by thick, sticky mucus building up in the sinuses. Symptoms can include facial pain, chronic congestion, loss of smell or taste, headaches, a constant need to clear the throat and a cough that is made worse by lying down.

    Sinusitis can usually be controlled with medications.

  • Nasal polyps and cystic fibrosis

    People with CF have an increased risk of developing nasal polyps; tissue growths that develop inside the nasal passages and sinuses. This is thought to be due to the chronic congestion and infection that CF can cause.

    Nasal polyps can vary in size and may grow individually or in a bunch. Large polyps can cause a blocked or runny nose, and a loss of smell or taste.

    Like sinusitis, nasal polyps can usually be controlled with treatments. These can include medications like steroids, antihistamines, antibiotics, sinus flushes, or with a surgical procedure called a polypectomy.

  • Clubbed fingers and cystic fibrosis

    People with CF (and other lung conditions) can experience swelling in the fingers, which causes the fingernail to become rounder, a condition known as nail clubbing. It is not known what causes this symptom.

  • Sweat and cystic fibrosis

    As CF is caused by a faulty gene that controls the movement of salt and water into and out of cells, people with CF often sweat more than people without the condition, and this sweat contains high levels of salt, which can crystalise visibly on the skin. This salty sweat is often used during the process of diagnosing CF, through a procedure called the ‘sweat test’. Read more about the sweat test in our factsheet.

  • Symptoms of cystic fibrosis in babies, toddlers and young children

    The vast majority of babies with CF are diagnosed by routine newborn screening, with most families learning of a positive screening result within six weeks of birth.

    Some babies have difficulty passing meconium (a thick substance in the stomach of all babies at the time of birth) in the days after birth and have a complication of CF called meconium ileus. This may cause vomiting and swelling of the tummy, and often requires surgery.

    The majority of babies with CF have very few symptoms, though some may develop: a cough, a voracious appetite, frequent oily or lose stools, or difficulty in gaining weight despite good feeding. When parents kiss their babies, they may find that their skin is noticeably salty.

  • Do carriers of CF get any symptoms?

    It’s common to be a carrier of cystic fibrosis; around one in 25 people in the UK carry one copy of the faulty gene that causes CF (you need two CF-causing genes to have the condition). There is currently no confirmed evidence that carriers of one CF-causing gene will develop symptoms.

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