Cystic fibrosis (patient information)

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Cystic fibrosis

Overview

What are the symptoms?

What are the causes?

Who is at highest risk?

Diagnosis

When to seek urgent medical care?

Treatment options

Where to find medical care for Cystic fibrosis?

Prevention

What to expect (Outlook/Prognosis)?

Possible complications

Cystic fibrosis On the Web

Ongoing Trials at Clinical Trials.gov

Images of Cystic fibrosis

Videos on Cystic fibrosis

FDA on Cystic fibrosis

CDC on Cystic fibrosis

Cystic fibrosisin the news

Blogs on Cystic fibrosis

Directions to Hospitals Treating Cystic fibrosis

Risk calculators and risk factors for Cystic fibrosis

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Editor-In-Chief: C. Michael Gibson, M.S., M.D. [1]; Assistant Editor-in-Chief: Meagan E. Doherty, Shaghayegh Habibi, M.D.[2]

Overview

What are the symptoms of Cystic fibrosis?

Symptoms in newborns

  • Delayed growth
  • Failure to gain weight during childhood
  • No bowel movements in first 24 to 48 hours of life
  • Salty-tasting skin

Symptoms related to bowel function

  • Belly pain from severe constipation
  • Increased gas, bloating and distended abdomen
  • Nausea and loss of appetite
  • Pale or clay colored stool, foul smelling with mucus
  • Weight loss

Symptoms related to the lungs and sinuses

What are the causes of Cystic fibrosis?

Who is at highest risk?

Diagnosis

Diseases with similar symptoms

When to seek urgent medical care?

Call your health care provider if an infant or child has symptoms of cystic fibrosis.

Call your health care provider if a person with cystic fibrosis develops new symptoms or if symptoms get worse, particularly severe breathing difficulty or coughing up blood.

Call your health care provider if you or your child experiences:

  • Fever, increased coughing, changes in sputum or blood in sputum, loss of appetite, or other signs of pneumonia
  • Increased weight loss
  • More frequent bowel movements or stools that are foul-smelling or have more mucus
  • Swollen belly or increased bloating

Treatment options

An early diagnosis of cystic fibrosis and a comprehensive treatment plan can improve both survival and quality of life. Follow-up and monitoring are very important. If possible, patients should be cared for at cystic fibrosis specialty clinics, which can be found in many communities. When children reach adulthood, they should transfer to a cystic fibrosis specialty center for adults.

Treatment for lung problems includes:

Treatment for bowel and nutritional problems may include:

  • A special diet high in protein and calories for older children and adults
  • Pancreatic enzymes to help absorb fats and protein
  • Vitamin supplements, especially vitamins A, D, E, and K
  • Your doctor can suggest other treatments if you have very hard stool

Where to find medical care for Cystic fibrosis?

Directions to Hospitals Treating Cystic fibrosis

Prevention of Cystic fibrosis

There is no way to prevent cystic fibrosis. Screening those with a family history of the disease may detect the cystic fibrosis gene in 60 - 90% of carriers, depending on the test used.

What to expect (Outlook/Prognosis)?

Most children with cystic fibrosis are fairly healthy until they reach adolescence or adulthood. They are able to participate in most activities and should be able to attend school. Many young adults with cystic fibrosis finish college or find employment.

Lung disease eventually worsens to the point where the person is disabled. Today, the average life span for people with cystic fibrosis who live to adulthood is approximately 35 years, a dramatic increase over the last three decades.

Death is usually caused by lung complications.

Possible complications

The most common complication is chronic respiratory infection.

Sources

http://www.nlm.nih.gov/medlineplus/cysticfibrosis.html

http://www.nlm.nih.gov/medlineplus/ency/article/000107.htm

https://www.nhlbi.nih.gov/health-topics/cystic-fibrosis


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