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 lungs, digestive system, bones, liver and fertility. However, there are also lesser-known symptoms affecting other parts of the body to look out for, which you can read about on this page, such as:
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.
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.
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.
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.
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 (PDF).
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.
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.