Cystic Fibrosis

A. Definition

Cystic fibrosis (CF) is a life-threatening, inherited disorder that causes severe damage to the lungs and digestive system. The name, cystic fibrosis, refers to the characteristic scarring (fibrosis) and cyst formation within the pancreas. It is caused by a genetic mutation that impacts the lungs, pancreas, liver, and intestine. Difficulty breathing is the most serious symptom.

B: General information

Cystic fibrosis was first recognized in the 1930s. It is an incurable disease that affects your child’s mucus and sweat glands, causing the digestive juices to become thick and sticky. Normally, these secreted fluids are thin and slippery. Instead of acting as a lubricant, these secretions plug up your child’s tubes, ducts, and passageways, especially in his or her lungs and pancreas. Frequent lung infections cause breathing difficulties. Other symptoms include sinus infections, poor growth, and infertility.

The symptoms and severity of CF vary. Bowel obstruction due to meconium ileus often appears in infancy and childhood. Some children have serious problems from birth, while others have a milder version with symptoms that don’t manifest until their teenage years or young adulthood. Children with CF have problems gaining weight, even with a normal diet and a good appetite.

CF is a chronic disorder that often puts emotional stress on the child and family due to the necessary, time-consuming, daily treatment routine. It is important to understand the relationship between your child’s illness, the impact on your family, and your child’s quality of life.

There is no cure for CF, but there are several treatment methods. Management of the disease has improved significantly over the past 70 years. While infants born with CF 70 years ago would have been unlikely to live beyond their first year, infants today are likely to live well into adulthood. Recent advances in the treatment of CF mean a fuller life for your child and others affected by the condition.

C. Social Security Administration Medical Listing 103.04 – Cystic Fibrosis

The Social Security Administration (SSA) recognizes that cystic fibrosis can be disabling; therefore, it is listed in Parts A and B of the SSA’s List of Impairments. However, since the severity of the disease varies between individuals, a diagnosis of CF, alone, does not constitute a disability. Your child’s medical records will need to show that least one of the following:

  • A chronic lung infection with symptoms that surface at least once every six-month period and are severe enough to require IV or nebulizer administration of antibacterial medications; or
  • Chronic bronchitis, pneumonia, or respiratory failure, requiring medical intervention or hospitalization at least six times per year or once every two months; or
  • Test results in the Forced Expiatory Volume (FEV1) exam that meet the criteria in the SSA’s charted CF FEV1 results, which can be found in the SSA Blue Book Listing of Impairments under the Cystic Fibrosis listing in Sections 3.04 and 103.04; or
  • For children in whom pulmonary function testing cannot be performed, the presence of two of the following:
    • History of dyspnea on exertion or accumulation of secretions as manifested by repetitive coughing or cyanosis, or
    • Persistent bilateral rales and rhonchi or substantial reduction of breath sounds related to mucous plugging of the trachea or bronchi, or
    • Medical imaging evidence of extensive disease, such as thickening of the proximal bronchial airways or persistence of bilateral peribronchial infiltrates.

If your child meets the FEV1 test criteria of the cystic fibrosis listing, then he or she will qualify automatically for disability benefits under the SSA. If not, your representative can help you determine whether your child’s illness is severe enough to qualify for disability benefits under the provisions of the Social Security Administration.