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About Cystic Fibrosis and Disability

Can I Get Disability Benefits for Cystic Fibrosis?

If you have cystic fibrosis, Social Security disability benefits may be available. To determine whether you are disabled by your cystic fibrosis, the Social Security Administration first considers whether your cystic fibrosis is severe enough to meet or equal a listing at Step 3 of the Sequential Evaluation Process. See How to Get Disability Benefits for Cystic Fibrosis by Meeting a Listing. If you meet or equal a listing because of cystic fibrosis, you are considered disabled. If your cystic fibrosis is not severe enough to equal or meet a listing, the Social Security Administration must assess your residual functional capacity (RFC) (the work you can still do, despite your cystic fibrosis), to determine whether you qualify for benefits at Step 4 and Step 5 of the Sequential Evaluation Process. See Residual Functional Capacity Assessment for Cystic Fibrosis.

About Cystic Fibrosis and Disability

What Is Cystic Fibrosis?

Cystic fibrosis is a severe genetic disease that causes production of excess mucus. It has major effects on the lungs and the digestive system. In cystic fibrosis the function of the exocrine glands is impaired. Exocrine glands secrete substances outside of the body or into body cavities. Examples include the mucous glands lining the bronchial tree, sweat glands, and glands in the pancreas that secrete digestive enzymes.

There are about 30,000 cases of cystic fibrosis in the U.S., but around 5% of the population unknowingly carries a mutated cystic fibrosis gene. The disorder principally affects whites of northern European descent, but all races can be affected.

Presently, there is no cure for cystic fibrosis. Care is mostly supportive—pulmonary hygiene to drain mucus from the lungs and prevent the onset of pneumonia, antibiotics to treat infection, replacement pancreatic enzymes, exercise, and good nutrition.

Lung Problems in Cystic Fibrosis

The lung problem in cystic fibrosis results from thick, dry bronchial mucus that cannot be adequately cleared from the airways. The excess mucus leads to coughing and sputum production sometimes with coughing up of blood (hemoptysis). Pneumonia and other lung infections are also a frequent problem. Chronic lung infections can lead to chronic obstructive lung disease.

The thick mucus needs to be removed from the lungs with frequent pulmonary hygiene, consisting of postural drainage and chest percussion. This is done by clapping with cupped hands on the front and back of the chest while the person lies with his or her head over the edge of a bed so that gravity helps clear the secretions. Mechanical devices may also be used for chest percussion.

Medications to thin mucous secretions (mucolytics) and bronchodilators to improve air flow are typical components of treatment. Additionally, an inhaled enzyme can help break down cellular material accumulating in the bronchi.

About 80% of cystic fibrosis patients die from lung disease, mostly related to infection.

Digestive Problems in Cystic Fibrosis

Thickened secretions can block digestive enzymes secreted by the pancreas. About 90% of cystic fibrosis patients have some degree of this problem. They must take pancreatic enzymes to digest food. Additionally, vitamin supplements are needed.

Thick, dry intestinal secretions can cause intestinal obstruction that requires surgery to clear. Stool softeners may help; enemas and intestinal lavage (rinsing) may be needed. Exercise is always important, to the extent that the patient can do so.

Other Problems Associated With Cystic Fibrosis

All cystic fibrosis problems are not necessarily pulmonary or digestive. Other problems can be associated with cystic fibrosis, including undescended testicles, diabetes mellitus, inguinal hernias, sinusitis, heart failure, and fibrosis of bile ducts (biliary cirrhosis). See Can I Get Disability Benefits for Diabetes?

Diagnosis of Cystic Fibrosis

The diagnosis of cystic fibrosis is made with a test called pilocarpine iontophoresis in which a sample of the person’s sweat is collected and analyzed for presence of sodium or chloride. People with cystic fibrosis have elevated levels, which is why their skin tastes salty. The diagnosis of cystic fibrosis has always been made long before a claimant files an application for disability benefits, but sometimes the Social Security Administration has to purchase the test to verify the diagnosis when a claimant’s medical records cannot be obtained.

Prognosis for Cystic Fibrosis

Despite the absence of a cure, improved treatment has steadily increased survival. Because of increased survival the Social Security Administration sees adult claimants with cystic fibrosis, as well as children. In 2008, the median predicted age of survival rose to 37.4 years, up from 32 in 2000.

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