Cystic Fibrosis: A Cure or A Treatment?

Cystic Fibrosis: A Cure or a Treatment?

The biggest genetic killer among children and young adults is Cystic Fibrosis. This disease is passed from parents who carry the gene. Parents have a faulty copy of the gene. Each child of parents who have faulty copies of the gene has a one in four chances inheriting the disease. Approximately one in 3500 of children born in the United States are afflicted with the disease that clogs the pathways to major organs with thick mucous disrupting their normal body functions. Not only does this disease block the airways with the thick mucus in the lungs but also blocks passages to major organs including the pancreas, liver and the reproductive system.

In the “1930’s, 80% of infants diagnosed with CF died before their 1st birthday.” (Whitford, 2005). In 1980, the average life expectancy for 82% of CF patients was 12 yrs of age; this was due to the research conducted to improve the treatments available (Cystic Fibrosis Foundation, 2004).

Despite the attempts to find a cure for Cystic Fibrosis (CF) the disease is still killing children and adults every year, the search for a cure is doing more harm than good therefore researchers should not focus funding and research on finding a cure.

In 1990, an infant was diagnosed with Cystic Fibrosis (CF), a rare genetic disease, at 3 months of age; the life expectancy of this child-based on the severity of the disease was 7 years of age. Although there were treatments available to prolong her life, they were not a guarantee.

After many months of tests and several hospital stays, this child was doomed to die a premature death without a cure, her abdomen was distended caused by her body’s inability to process the nourishment she received and often she gasped for air due to the build up of thick mucous in her lungs.

Today at age 16, she is alive, due to the research that has been conducted to improve and find new treatments. She has chosen to live one day at a time, she is a cheerleader, a dancer and a straight A student, she weighs just 90 lbs and is 5’ 3”, her body is all muscle, her stomach is no longer distended, she breathes easier most of the time. She undergoes daily lung treatments lasting from half hour to one full hour and enzyme intake to prevent the disease from advancing into the next stage, requiring a lung transplant. She cannot remember a time in her life she did not know she was supposed to die.

Although a cure would be the ideal outcome for patients with CF, these patients would benefit better from enhanced and newly found treatments. Treatments over the years have extended these patient’s lives from months to years to decades (Whitford, 2005). These patients for many years used less than ideal treatments, for example, sleeping in a sauna like tent to keep their lungs moist, now replaced by an aerosol inhaler. In addition, a vest treatment was invented to replace the chest “pounding” technique a therapy that lasts Ð'Ð... hour to one hour, which patients had to rely upon from family members or respiratory therapists three to four times a day to loosen the build up of mucous in the lungs, which could cause the inability to breath.

In 1993, the first CF gene therapy was administered to a patient and in hope of a cure; presently gene therapy has been conducted on a wide population of CF patients and has not offered a cure, only provided disappointment. During the same year a potential gene therapy cure was administered to a population of CF patients, while the cure was being administered a new treatment was discovered to treat the symptoms of CF and has prolonged many patients’ lives. In fact, the life expectancy has increased by 34% due to the new treatments researchers are enhancing and discovering each year (Cystic Fibrosis Foundation, 2004).

Another newly found treatment Weiss explains is to “take aim at a problematic enzyme called neutrophil elastase… at high concentrations, the enzyme damages lung tissues and suppresses anti bacterial immune response.” (1991, 3) This treatment entails inhaling a counter-acting enzyme in aerosol form twice daily