Social Isolation Among Young Adult Patients With Cystic Fibrosis

Cystic fibrosis (CF) is a lethal autosomal recessive disorder with a clinical incidence of 1 in every 3500 newborns1. Currently, over 4000 Canadians have CF, with 60% being adults2. In the past, CF was considered a fatal disease with a life expectancy of less than two years, however, advances in enzymatic and antibiotic therapy have greatly improved the life expectancy of patients afflicted with CF3. Currently, the median age of Canadian CF patients is 50 years2.

Discussions of such issues suggest that other external factors may be influencing the decisions and maintenance of many CF patients. For instance CF patients need to prioritise the way in which they self-manage their treatment, this can be difficult when trying to balance family, work, education and other responsibilities and their levels of adherence may fluctuate (Sawicki, Sellers, & Robinson, 2009). These fluctuations can be detrimental to their condition and may result in hospitalisation, causing additional disruptions in their daily life. However, engaging in so called normal activities might therefore also reinforce a sense of being healthy and having a nondifferent identity. Conquering a healthy balance is one which CF patients may need to adopt. One of the significant points from McCormick et al, (2005) research underlined the substantial clinical differences for females in comparison to males. The authors found that females had worst disease severity than males. Why might this difference be occurring? In 2009 Besier, Schmitz and Goldbeck, investigated the effects of relationship status on life satisfaction, as numerous findings suggest that despite the relationship status, many females CF patients still reported worse quality of life scores than males (Walters, Britton, & Hodson, 1993). Besier et al, (2009) administrated the Life satisfaction questionnaire on a sample of 243 CF (129

Cystic Fibrosis (CF) is a genetic disorder in which mucus glands produce abnormally thick secretions. These secretions can lead to chronic infections of the lungs and eventually lead to obstruction of the pancreas, resulting in digestive enzyme deficiency, the liver is also sometimes affected. Secretions from the sweat and salivary glands of a CF patient frequently contain abnormally high amounts of sodium and chloride. Because the body produces a high amount of salt, a sweat test is generally used to diagnose the disorder.

The Cystic Fibrosis Foundation provides support to help improve the lives of people who live with the disease. The foundation’s main goal is to find a cure to Cystic Fibrosis is an inherited disease caused by changed in a gene on chromosome seven. It is described as a buildup of mucus in the lungs and organs. The mucus in the lungs clogs the airways and bacteria grows, gets blocked in and eventually leads to infections that causes lung damage. After lung damage has occurred, respiratory failure then happens.

CF is found in nearly one of every three-thousand live births. But more than eighty percent of the patients are diagnosed by age three. Today, nearly forty percent of the diagnosed inhabitants are at the age of eight-teen or older.

“About 1 in 4,000 children in the United States are born with CF” (Crosta, 2009) and “one in every 3,600 children born in Canada [have] cystic fibrosis” ("Cystic fibrosis Canada," 2011). According to several resources a consensus has formed which proposes that people with northern European ancestry, specifically those that are white, are more likely to be carriers of the disease and thus more at risk of having children with the mutated gene. This risk is even more likely if the other parent of the child is a carrier. Another risk factor for CF is “family history, since the disease is hereditary it increases they likely hood of

carriers, and then there still a chance the child will not get C.F. According to the Cystic Fibrosis foundation, even if both of the parents are C.F. carriers, the chances of their child having C.F. are only 25% (About Cystic Fibrosis). Similarly, a table from The diagnosis of cystic fibrosis by Beryl J. Rosenstein and Garry R. Cutting summarizes criteria for diagnosis C.F., according to the chart you must have at least one of the following two observable features which include, having a sibling who has C.F. or having a newborn who was tested for C.F and the results were positive. If you are positive for one of the traits, then in addition to that you must have “an increased sweat chloride concentration by pilocarpine iontophoresis on two or more occasions or identification of two C.F. mutations (as previously stated) or demonstration of abnormal nasal epithelial ion transport” (Rosenstein 1). The required criteria that are needed for a diagnosis of C.F. are encouraging. The illness is not airborne, but rather genetic, and even if the parents have a positive gene for C.F., there still is a good chance the child will not have

Many tests may be performed before a person is ever diagnosed with Cystic Fibrosis. A newborn screening test can be done to check an infants’ blood sample for a certain component related to CF. Many other tests must be completed before diagnosis. A sweat test is necessary for confirmation of CF. If a sweat test is not completely accurate, genetic testing must be

I have been dealing with cystic fibrosis my entire life because my fourteen year old brother was diagnosed with it when he was born. He was in

Hi Dr. Lori, on newly diagnosed pt's with Cystic fibrosis (CF) one would gear them to NIH (National Institute of Health), Mayo clinic, located in Arizona or Minnesota, were they can be part of treatment groups or pilots for medications. There are so many advances in the treatment of CF that there is an abundance of resources out there. Resources can be reached from the care managers or through joining a family group of individuals with CF. My friend, Ms. C, stated that her two sons who are now 19 and 22 years old. They have no hospitalizations in over 5 years. Statistics are numbers on pages of people we don't know, doing research for a disease. These young men would look forward to their weekly infusions of high doses of vitamins and glutathione when they were young because it made them feel better.

Abstract: The main goal of this paper is to explain what Cystic Fibrosis is and also to explain what

The impacts of CF on a human can be very serious and life-shortening. A person with CF usually has their airways blocked by the mucus produced, therefore having trouble breathing. This can also result in the person running out of breath easily, and not being able to exercise for long periods of time. The person affected by CF needs to be checked regularly at Cystic Fibrosis Care Centers to maintain their CF. They should always take the medicine prescribed by their CF manager/doctor. A person affected by CF can’t do all the regular activities that people who aren’t affected by CF can do, like running, going to the gym and general strenuous activities. People affected with CF usually have a life expectancy of around 40 years assuming that the

Cystic fibrosis is a pulmonary disease that affects around 30,000 individuals in the United States and 70,000 individuals worldwide.1 There are about 800 new cases diagnosed each year.1 Understanding of this condition has increased over the years as research has found it to affect more of the body’s systems than initially thought in the late 1900s.2 Due to the common complications it causes, cystic fibrosis is commonly generally classified as a pulmonary condition. However, it can cause dysfunction in many of the body’s systems including the hepatic system, the reproductive system, and the digestive/metabolic system, among others.1

Cystic Fibrosis (CF) is an autosomal recessive genetic disorder most commonly found amongst the Caucasian population. In the United States, the reported prevalence of CF for the Caucasian population is 1:3200, for African American is 1:15000 and for Asian American is 1:310001.

This is a great improvement over survival rate of the 1950s with the life expectancy of 1 year or less for cystic fibrosis patients. Unfortunately, since it is a recessive genetic disease, there are many men and women who are carriers of the disease without actually having the disease themselves. If each parent is a non-affected carrier of cystic fibrosis, there is only a 25 percent chance of having a non-affected, non-carrier child and 50 percent chance of having a child that is a non-affected carrier of cystic fibrosis. Unfortunately there is also a 25 percent chance of having a child affected by cystic fibrosis. This makes prenatal genetic screening very important.