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Cystic Fibrosis

An inherited disease that makes mucus thick and sticky, affecting the lungs, pancreas and other organs — with care and new medicines helping people with CF live longer, fuller lives than ever before.

Get emergency help — call 911 or go to the emergency department if someone with CF:

  • is coughing up a lot of blood (NHLBI);
  • suddenly has trouble breathing or talking, is confused, or has a bluish color on the skin or lips — signs of respiratory failure (NHLBI); or
  • shows signs of severe dehydration or heat illness, such as confusion, a change in alertness, or a rapid pulse or rapid breathing; severe dehydration is a life-threatening emergency (MedlinePlus). People with CF lose more salt in their sweat, so hot weather and exercise raise the risk of a low blood-sodium level, which can cause nausea, vomiting, headache, muscle weakness and cramps (CF Foundation).

Get urgent care right away for:

  • Sudden chest pain or sudden shortness of breath, which may be a sign of a collapsed lung (pneumothorax) (NHLBI); call 911 if breathing becomes hard.
  • Severe belly pain (often on the right side), a swollen belly, or nausea and vomiting, which can mean a blockage in the bowel called DIOS (distal intestinal obstruction syndrome). Contact your CF team immediately; if you go to an emergency department, make sure your CF team is told, because DIOS can be missed (Cystic Fibrosis Canada).
  • Coughing up a small amount of blood — call your doctor (NHLBI).

Call your CF care team promptly for signs of a lung flare-up (pulmonary exacerbation): more coughing or wheezing, chest congestion, a change in mucus color, fever, weight loss or a poor appetite (NHLBI, MedlinePlus).

What is cystic fibrosis?

Cystic fibrosis (CF) is a genetic disease that affects the lungs, pancreas and other organs, and it gets worse over time (CF Foundation). Normal mucus is slippery and protective; in CF it becomes thick and sticky, and as it builds up it can block, damage or infect the organs it lines (NHLBI).

In the lungs, mucus clogs the airways and traps germs, leading to infections and inflammation; in the pancreas, it blocks the digestive enzymes the body needs to absorb food; it can also block bile ducts in the liver and affect men’s fertility (CF Foundation). Pancreas damage can also lead to CF-related diabetes (MedlinePlus Genetics).

Genes and carriers

CF is caused by changes (mutations) in the CFTR gene, which makes a protein that controls how salt and water move in and out of cells. More than 2,000 mutations can cause CF (NHLBI). A child must inherit a mutated CFTR gene from each parent to have CF. Someone with one mutated copy is a carrier: carriers are generally healthy, though some have mild symptoms (NHLBI). When both parents are carriers, each child has a 1 in 4 chance of having CF, a 1 in 2 chance of being a carrier, and a 1 in 4 chance of neither (NHLBI, CF Foundation).

How common is it?

There are close to 40,000 children and adults living with CF in the United States, and an estimated 105,000 people have been diagnosed with CF across 94 countries; CF can affect people of every racial and ethnic group (CF Foundation). It occurs in about 1 in 2,500 to 3,500 white newborns, 1 in 17,000 African Americans and 1 in 31,000 Asian Americans (MedlinePlus Genetics).

Newborn screening and the sweat test

Common symptoms

Symptoms vary widely (NHLBI) and can include a cough that brings up mucus, wheezing, frequent lung and sinus infections, salty-tasting skin, poor growth or weight gain despite a good appetite, greasy, bulky stools or constipation, a blocked intestine soon after birth, and clubbing (widening) of the fingertips and toes (CF Foundation, NHLBI, MedlinePlus).

A far brighter outlook

In the 1950s, a child with CF rarely lived long enough to attend elementary school (CF Foundation). Today, based on 2025 CF Foundation Patient Registry data, the median age of survival for people with CF born between 2021 and 2025 is predicted to be 66 years — meaning half are expected to live longer than that, if today’s treatments stay the same (CF Foundation). About 60% of people with CF are now adults, and many go to college, build careers, marry and have children (CF Foundation).

There is still no cure, and too many lives are cut short (CF Foundation): of the deaths reported in the Registry in 2024, half occurred before age 38.8. These figures describe the whole CF population, not any one person — your CF team is the best guide to your own health (CF Foundation).

Side by side

Six approaches compared

For every condition we look at the same six approaches: what each involves, what it typically costs, and what a patient can realistically expect.

ApproachWhat it involves Estimated costWhat to expect
Conventional medicine (AMA) Lifelong care at a CF Foundation-accredited care center: daily airway clearance, inhaled medicines (airway openers, mucus thinners, antibiotics), CFTR modulators for eligible mutations, pancreatic enzymes and CF vitamins, yearly diabetes screening, infection prevention, and lung transplant for advanced lung disease. CFTR modulators are very expensive: an independent 2020 review said their prices cost many millions of dollars over a patient’s lifetime. Medicare Part D out-of-pocket costs are capped at $2,100 in 2026, and CF Foundation Compass (free) helps find assistance. Other care: cost estimate being researched. No cure yet, but care has transformed the outlook: the predicted median survival for babies born 2021–2025 is 66 years. Modulators help many people but only for certain mutations, and only while they are taken.
Chiropractic No role in treating cystic fibrosis. Not applicable. We found no research showing chiropractic care helps CF. It is not a substitute for airway clearance or any CF treatment; ask your CF team before any spinal manipulation.
Acupuncture Being researched — coming soon.
Herbal medicine No herb or supplement treats CF. CF-specific vitamins (including A, D, E and K) are part of medical care and are chosen by your CF team. Not applicable for herbs. CF vitamins: cost estimate being researched. St. John’s wort can make CFTR modulators less effective, and grapefruit must be avoided with them. Tell your CF team about every supplement.
Massage therapy Chest physical therapy (clapping, vibration and postural drainage) is one of the airway clearance techniques taught by CF teams. Gentle massage may be used for comfort. Chest physical therapy at home: free once learned. Massage: about $60–$120 for 45–60 minutes with a private therapist, or $50–$90 at clinics, gyms and spas. Small studies report less anxiety, better mood and less muscle tightness with massage. Massage for comfort does not replace airway clearance or treat lung disease.
MBHA Wellness Coach Nutrition goals with a CF dietitian, salt and fluids in hot weather, exercise, treatment routines and burnout, mental health, school and work accommodations, family planning, moving to adult care, and help paying for care. Cost estimate being researched. CF Foundation Compass is free. Supports — never replaces — care at a CF center. Good daily habits help treatments work and make the treatment load more manageable.

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Conventional medicine (AMA)

CF care is complex and works best as a partnership between the person with CF, their family and a specialist team (CF Foundation). Although there is not yet a cure, advances in treatment are helping many people live longer, healthier lives (NHLBI).

1. Care at an accredited CF center

The CF Foundation funds and accredits a network of more than 130 care centers at hospitals across the country (CF Foundation). The core team may include doctors, nurses, dietitians, respiratory therapists, pharmacists, genetic counselors, social workers and a mental health coordinator (CF Foundation). When possible, care should be at a CF specialty clinic, and when children reach adulthood they should move to an adult CF center (MedlinePlus).

2. Airway clearance

Daily airway clearance loosens thick mucus so it can be coughed out; this improves breathing and lowers the chance of infection (NHLBI). Methods include breathing techniques, handheld PEP devices, chest physical therapy and vibrating vests — see Airway clearance below.

3. Inhaled and other medicines — by type, not dose

4. CFTR modulators

These pills target the underlying problem: they help the faulty CFTR protein work better (NHLBI). Because different mutations cause different defects, each modulator works only for people with specific mutations, so the first step is knowing your mutations (CF Foundation). There are five modulators (CF Foundation):

Up to 90% of people with CF are eligible for one or more of these medicines (MedlinePlus). People who are Asian, Black or Hispanic are more likely to have mutations that don’t respond to current modulators; if you aren’t eligible, ask your team about clinical studies and support — learning this can be very hard (NHLBI).

Modulators are not a cure. Their effects last only as long as the medicine is in your system (CF Foundation), and the CF Foundation notes there is still no cure for CF (CF Foundation). Keep up your other treatments unless your CF team tells you otherwise.

Safety: both labels carry a boxed warning about serious, potentially fatal liver injury, so liver blood tests are checked before and during treatment (FDA label, FDA label). Modulators can interact with other medicines, including birth control pills, and some people have anxiety or depression while taking them (NHLBI). Avoid grapefruit and St. John’s wort — see Herbal medicine below. Your team sets your dose; we don’t list doses here.

5. Nutrition, enzymes and vitamins

  • Pancreatic enzyme capsules are taken with meals and most snacks so the body can digest food and absorb nutrients (CF Foundation). Taking too many can damage the intestines and too few can stop you absorbing nutrients, so never change the amount without your care team (CF Foundation).
  • Vitamins: people with CF have trouble absorbing the fat-soluble vitamins A, D, E and K, so many take a CF-specific multivitamin (CF Foundation).
  • Calories: before modulators, most people with CF needed extra calories. Today many can eat a typical healthy diet, while others — such as those who can’t take modulators — still need extra (CF Foundation). Some people on modulators have gained unwanted weight on the traditional high-calorie, high-fat, high-salt CF diet (CF Foundation).

6. CF-related diabetes (CFRD)

Nearly 30% of adults with CF have CFRD. It often causes no symptoms, so people with CF aged 10 and older should have a yearly oral glucose tolerance test; it is managed with insulin, blood-sugar monitoring, a balanced diet and staying active (CF Foundation).

7. Preventing infections

  • People with CF can pass certain germs to each other (cross-infection). The CF Foundation recommends that people with CF stay at least 6 feet from others with CF and from anyone who is sick, and that people with CF who don’t live together avoid close contact such as hugging or sharing objects (CF Foundation).
  • Germs such as Pseudomonas thrive in moist places like humidifiers, sinks, pools and hot tubs (CF Foundation). Teach children to wash their hands often and, as they grow, to clean their equipment (NHLBI).
  • Vaccines: yearly flu shots, COVID-19 and pertussis vaccines, and pneumonia vaccines when appropriate; family members should be vaccinated too (NHLBI). Flu, COVID-19 and RSV can make people with CF sicker (CF Foundation).

8. Advanced lung disease and transplant

Oxygen therapy, pulmonary rehabilitation and breathing support may be needed for severe lung disease (NHLBI). A lung transplant may be an option when the lungs can no longer support the body’s needs; it can improve quality of life but requires a serious physical and emotional commitment (CF Foundation). For advanced disease, palliative care can improve comfort and quality of life (NHLBI).

What it costs

  • CFTR modulators are among the most expensive medicines. In 2020 the independent Institute for Clinical and Economic Review (ICER) said the manufacturer’s prices cost “many millions of dollars over the lifetime of an average patient,” and that a price in line with Trikafta’s benefits ($67,900–$85,500 a year) would need at least a 73% discount from its list price at the time (ICER).
  • Medicare Part D: once your out-of-pocket costs for covered drugs reach $2,100 in 2026 ($2,400 in 2027), you pay nothing more for covered Part D drugs that year; Extra Help lowers costs for people with limited income (Medicare.gov).
  • CF Foundation Compass (1-844-266-7277) is free and confidential. Case managers help with insurance problems and appeals and refer people to financial assistance programs for medicines, treatment and living expenses, whatever their income or insurance (CF Foundation). See MBHA Wellness Coach below for SSI and Medicaid.
  • Clinic visits, inhaled medicines, enzymes and equipment: cost estimate being researched.

How well it works — what to expect

Specialized CF care has added years and improved quality of life (CF Foundation), and the predicted median survival keeps rising (CF Foundation). Many people still face hospital stays, complications and treatment plans that can take 2 to 3 hours a day (CF Foundation). Even when you feel better, keep seeing your CF team regularly (NHLBI).

Find a medical doctor in our directory

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Chiropractic

Chiropractic care has no role in treating cystic fibrosis. We found no research showing that spinal adjustment improves lung function, mucus clearance, digestion or any other part of CF, and no chiropractic approach replaces airway clearance or CF medicines.

CF can cause bone problems, including osteoporosis, as well as joint and muscle pain (NHLBI). If you are considering any hands-on treatment for back or joint pain, talk with your CF team first.

Find a chiropractor in our directory

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Herbal medicine

No herb or dietary supplement treats cystic fibrosis. Supplements can interact with medicines, and the FDA does not review most supplements for safety and effectiveness before they are sold (NCCIH).

Vitamins are different

The vitamins people with CF take are part of medical care: because CF makes it hard to absorb fat, many people need a CF-specific multivitamin with the fat-soluble vitamins A, D, E and K, and sometimes a single vitamin such as vitamin D, as recommended by their care team (CF Foundation). Ask your team before adding anything else.

Herbs and foods that interfere with CFTR modulators

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Massage therapy

Chest physical therapy — part of airway clearance

Chest physical therapy (CPT) uses positions that let gravity drain mucus from different parts of the lungs, combined with clapping (percussion) and vibration on the chest wall, followed by coughing or huffing (CF Foundation). Parents, siblings and friends can learn to do it for a child, and respiratory or physical therapists do it at the care center (CF Foundation). Clapping must avoid the spine, breastbone, stomach and lower ribs or back, and should not be done on bare skin; your CF team will show you the right positions and how long and how often to do it (CF Foundation).

Massage for comfort

  • A 1999 study of 20 children aged 5 to 12 had parents give a 20-minute massage at bedtime for a month, compared with reading together. Children and parents reported less anxiety, and the children’s mood and peak air flow improved (study, J Pediatr Psychol).
  • A 2019 pilot study of 24 young people aged 8 to 21 found that deep-tissue massage over 10 to 12 weeks significantly reduced muscle tightness, with smaller, borderline improvements in pain and relaxation; quality-of-life scores did not differ (pilot study, Int J Ther Massage Bodywork).
  • In adults, a single session combining physiotherapy techniques and massage was linked with less pain and easier breathing (study, J Cyst Fibros).

These studies are small; massage may help comfort and stress but does not treat CF lung disease or replace airway clearance.

Safety tips

What it costs

Chest physical therapy done at home by a trained family member costs nothing once learned. Massage runs about $60–$120 for 45–60 minutes with a private therapist, or $50–$90 at clinics, gyms and spas (CostHelper).

Find a massage therapist in our directory

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MBHA Wellness Coach

CF care happens mostly at home, every day. An MBHA Wellness Coach can help you and your family turn the plan from your CF team into routines that fit real life — and notice when you need more support.

Eating well with a CF dietitian

Salt and fluids in hot weather

  • People with CF lose more salt in sweat, so heat and exercise raise the risk of low blood sodium; know the signs — nausea, vomiting, headache, muscle weakness and cramps (CF Foundation).
  • Don’t wait until you’re thirsty to drink. Dark yellow urine, headache, nausea, loss of appetite and tiredness can be signs of dehydration (CF Foundation).
  • A high-sodium eating plan or a salt supplement may be recommended at times (NHLBI). Ask your CF team how much salt and fluid you or your child needs.

Exercise

Physical activity may improve lung function, help with airway clearance, build strength and help keep weight healthy; check with your provider before starting a program (NHLBI). Exercise also helps bones, mood and diabetes (CF Foundation). A 2022 Cochrane review found that activity programs of six months or more likely improve exercise capacity, that harms appear rare, and that there is no reason to discourage regular exercise (Cochrane review, 2022). Whether exercise can replace other airway clearance methods is still uncertain (Cochrane review, 2022), so don’t drop your usual routine without your team’s advice.

Treatment burden and mental health

School and work

Students with CF may need accommodations for absences and treatments, written into an Individualized Education Program (IEP) or 504 Plan, such as more time to eat, snacks and a water bottle in class, and free access to the bathroom (CF Foundation). For work and education rights, Compass can connect you with people who can answer legal questions about employment, education and disability benefits (CF Foundation).

Moving to adult care

As teens grow more independent, they need to take charge of their appointments, medicines and treatments (NHLBI), and when children reach adulthood they should transfer to an adult CF center (MedlinePlus). A coach can help a teen practice these skills one step at a time.

Family planning and genetic counseling

Help paying for care

  • CF Foundation Compass (1-844-266-7277) offers free, one-on-one help with insurance, appeals, financial assistance and transplant planning (CF Foundation).
  • SSI for children: a child with a severe, long-lasting disability may qualify for Supplemental Security Income; part of the parents’ income and resources may be counted. In most states, a child who gets SSI can also get Medicaid (Social Security Administration).
  • Medicaid for children: the EPSDT benefit covers medically necessary screening, diagnostic and treatment services for children under 21 enrolled in Medicaid (Medicaid.gov).

Another approach

Airway clearance

Airway clearance techniques (ACTs) loosen thick, sticky mucus so it can be cleared from the lungs by coughing or huffing, which may help decrease lung infections and improve lung function (CF Foundation). Infants and toddlers need a parent or caregiver to help; older children and adults can choose techniques they can do on their own (CF Foundation).

The main techniques

  • Coughing and huffing — the most basic ACT; all the techniques involve it (CF Foundation).
  • Active cycle of breathing (ACBT) and autogenic drainage — breathing exercises that relax the airways and move mucus out (NHLBI).
  • Positive expiratory pressure (PEP) and oscillating PEP — masks or mouthpieces that make you breathe out against resistance; oscillating devices also vibrate (CF Foundation).
  • Chest physical therapy — see Massage therapy above.
  • High-frequency chest wall oscillation (the vest) — a vest attached to a machine vibrates the chest to loosen and thin mucus (CF Foundation).

Putting it together

Bronchodilators are inhaled before airway clearance, mucus thinners can be taken during it, and inhaled antibiotics afterward (CF Foundation). Your respiratory therapist can teach you several techniques — and the best one is the one you are most likely to do every day (CF Foundation).

What the research says

  • A Cochrane overview of six reviews found little evidence that any one technique is better than another, and concluded that people with CF should choose the technique that best fits their needs — comfort, convenience, flexibility, practicality and cost (Cochrane overview, 2019).
  • A 2023 Cochrane review found that airway clearance may increase mucus movement in the short term; long-term effects could not be judged, and the studies were done before modulators were widely used (Cochrane review, 2023). If you take a modulator and feel better, talk with your team before changing your routine.

Still being researched: Acupuncture. We add each approach once its costs and results are sourced. Are you a practitioner with experience treating Cystic Fibrosis? Tell us.

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Sources

This page is for education only and is not medical advice. Costs are typical U.S. ranges and estimates; yours will depend on your provider, location and insurance. Talk with your doctor before starting, stopping or combining any treatment. In an emergency, call 911. See our disclaimer.

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