Cystic Fibrosis Overview

Cystic fibrosis is a genetic disorder that causes mucus in the body to become thick, dry, and sticky. This sticky mucus builds up and causes problems in many of the body's organs, especially the lungs and the pancreas. People who have cystic fibrosis can have serious breathing problems and lung disease. They can also have problems with digestion and nutrition, leading to growth and development issues. There is no cure for cystic fibrosis and the disease generally gets worse over time. Life expectancy has increased greatly in the last 40 years. Life expectancy with treatment is into the 40's and longer.

Experts have not yet found a cure for cystic fibrosis, but new and improved treatments help people who have cystic fibrosis live longer. The types of treatment you or your child receives depend on what kinds of health problems the cystic fibrosis is causing and how your body responds to different types of treatment. Most people combine medicines, home treatment methods (including respiratory and nutritional therapies), and other special care to manage the disease.

Living with cystic fibrosis treatments

If you or your child has cystic fibrosis, you should learn as much as you can about the disease and work closely with your doctors to learn how to manage it. Ongoing medical care is important. The ongoing treatment of CF depends on the stage of the disease and the organs involved. Clearing mucus from the lungs is an important part of the daily CF treatment regimen. Chest physical therapy helps with airway clearance. It requires vigorous percussion (by using cupped hands) on the back and chest to dislodge the thick mucus. Other forms of airway clearance can be done with the help of mechanical devices used to stimulate mucus clearance. Other types of treatments include: antibiotics and mucus-thinning drugs.

When CF affects the pancreas, as it does in most patients, the body does not absorb enough nutrients needed to grow and to thrive. Most people with CF eat a high-calorie diet and take replacement vitamins, and many take pancreatic enzyme replacements to help them absorb nutrients.

Healthy Pointers:

Good self-care includes:

• Eating a healthy diet.
• Avoiding tobacco smoke.
• Washing your hands often to reduce your chances of infection.
• Exercising frequently.
• Drinking lots of fluids.
• Doing chest physical therapy every day.
• Having annual flu and other appropriate vaccinations.
• Taking your medicines as prescribed.

You can expect to have a normal sex life.

• Most men with CF are infertile, but they may be helped with modern reproductive techniques.
• Although most women with CF may be less fertile than women who don't have CF, they usually can have children. Talk to your doctor before becoming pregnant.

Having a positive attitude is also helpful.

If you are a parent of someone with CF, do not feel guilty about passing it on to your child. And do not be overprotective; encourage your child to be active and self-reliant.

Questions? Call us at 1.888.282.5166 or email us.

Resources:

http://www.cff.org/chapters_and_care_centers/

http://www.nhlbi.nih.gov/health/dci/Diseases/cf/cf_living.html

http://clinicaltrials.gov/ct/search?term=cystic+fibrosis&submit=Search

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