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CF & Progression: Understanding the Underlying Impact

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La FQ y su progresión: Comprensión del impacto subyacente

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CF Milestones

Over the years, the research and medical communities have learned more about CF, including its cause. As a result of extensive research, advancements in diagnosis and management of the disease have helped improve the care of people with CF.

  1. Today

    Advances in science, medicine, and the care of people with CF continue to be made.

  2. 2016

    The median predicted survival for people with CF is 48 years.

    For the first time, there are more adults than children living with CF.

    Median predicted survival numbers are based on data relating to all people in the CFF Patient Registry.

    Median predicted survival means that in this year, half the people with CF were expected to live longer and half were expected to live less than this age.

    Nearly 60% of CF diagnoses are detected by newborn screening.

  3. 2012

    Medicines that modulate activity of the CFTR protein are first introduced.

  4. 2002

    The median predicted survival for people with CF is 31 years.

    Median predicted survival numbers are based on data relating to all people in the CFF Patient Registry.

    Median predicted survival means that in this year, half the people with CF were expected to live longer and half were expected to live less than this age.

  5. 1997

    Inhaled antibiotics that target bacteria in the lungs first become available.

  6. 1993

    Mucolytics, medicines that help thin out the mucus in the lungs, are introduced.

  7. 1992

    The median predicted survival for people with CF is 29 years.

    Median predicted survival numbers are based on data relating to all people in the CFF Patient Registry.

    Median predicted survival means that in this year, half the people with CF were expected to live longer and half were expected to live less than this age.

    Function of the CFTR protein as a channel that allows chloride passage is discovered.

  8. 1990

    Anti-inflammatory medicines are first studied in people with CF to help reduce inflammation caused by pulmonary exacerbations.

  9. 1989

    The cystic fibrosis transmembrane conductance regulator (CFTR) gene is identified as the gene responsible for the defective CFTR proteins that cause CF.

  10. 1988

    A vest is introduced to make chest physical therapy at home easier.

  11. 1985

    The median predicted survival for people with CF is 25 years.

    Median predicted survival numbers are based on data relating to all people in the CFF Patient Registry.

    Median predicted survival means that in this year, half the people with CF were expected to live longer and half were expected to live less than this age.

  12. 1978

    Coated pancreatic enzymes that help with nutrient absorption are introduced.

  13. 1964

    The first comprehensive CF treatment plan is developed, focusing on scarring in the lungs, infections, and pancreatic issues.

  14. 1961

    The Cystic Fibrosis Foundation forms a care center network.

  15. 1959

    Sweat chloride testing becomes a standard procedure for diagnosing CF.

  16. 1955

    The median predicted survival for people with CF is 5 years.

    Median predicted survival numbers are based on data relating to all people in the CFF Patient Registry.

    Median predicted survival means that in this year, half the people with CF were expected to live longer and half were expected to live less than this age.

    Scientists study the use of pancreatic enzymes in CF.

  17. 1953

    Extra salt loss in sweat in people with CF is connected to problems at the cellular level.

  18. 1949

    Scientists begin to think that CF is caused by a defect in a single gene and single protein.

  19. 1946

    Scientists use antibiotics to treat lung infections in people with CF.

  20. 1938

    First comprehensive medical report on CF is written.

To learn more about available treatments to help manage symptoms and treat CF, talk to your care team.

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Frequently Asked Questions

What is a genetic disease?

A genetic disease is a disease you are born with, like CF. It's inherited from your parents through your genes.

What causes CF?

CF is the result of 2 CFTR gene mutations that produce defective CFTR proteins. These proteins are not built correctly, so they don’t work the way they should. This causes a buildup of thick, sticky mucus throughout different parts of the body that can cause lasting damage over time.

What is a CFTR protein?

CFTR proteins are found on the surface of certain cells in different parts of the body. They help the body to maintain a healthy balance of salt and water that keeps mucus thin and watery. Thin and watery mucus is important for normal functioning of organs such as the lungs, pancreas, liver, and intestines.

Who gets CF?

CF is a genetic disease, which means you inherit it from your parents. It is most common in Caucasian populations.

 

How many people have CF?

There are approximately 30,000 people living with CF in the United States.

What are the symptoms of CF?

People with CF experience a wide variety of symptoms, including:

  • Wheezing, shortness of breath, and persistent coughing
  • Lung infections and lung disease
  • Difficulty digesting food
  • Poor growth, delayed puberty, and slow weight gain
  • Salty sweat

How does CF affect the body over time?

CF affects different parts of the body in different ways over the course of a lifetime. This includes the lungs, digestive system, liver, and bones. Over time, the symptoms of CF can also cause other conditions.

What does disease progression mean for CF?

Progression can occur when the thick, sticky mucus building up throughout the body causes inflammation and scarring in many different organs, leading to permanent damage.

Glossary

CF progression

Progression of CF is the buildup of permanent damage throughout certain organs in the body that can lead to a loss of function.

CFQ-R

The Cystic Fibrosis Questionnaire–Revised (CFQ-R) is a questionnaire used to measure the impact of a treatment on a person’s overall health, daily life, well-being, and symptoms.

Cystic fibrosis transmembrane conductance regulator (CFTR) gene

The CFTR gene tells the cell how to produce CFTR proteins, which are channels that control the movement of salt and water into and out of certain cells in a number of organs, including the lungs.

FEV1

This stands for forced expiratory volume in 1 second, which measures the amount of air a person can exhale in 1 second. It is used to assess how well a person’s lungs are functioning.

Gene mutations

Sometimes changes or mistakes occur in genes. These are called mutations. Some mutations may cause the gene to behave differently than normal. This can result in a person having certain diseases like cystic fibrosis.

 
Genes

Genes are like an instruction manual for the body. They carry the code that determines our physical characteristics (eg, height, eye color, hair color, and other characteristics). People have 2 copies of most genes, 1 copy from their father and 1 from their mother.

Pancreas

Part of the digestive system found just behind your stomach. It produces enzymes (which help break down food) and insulin (which helps to keep the amount of glucose in the blood stable).

Pancreatic enzymes

Substances produced by the pancreas, which help break food into very small fragments that can be absorbed into the bloodstream.

Pulmonary exacerbations

Periods of worsening respiratory symptoms in people with CF, which may require antibiotic treatment and/or a stay in the hospital.

 

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