Effects of Cystic Fibrosis on Families

There are many chronic conditions that people are unaware of or know little about, Cystic Fibrosis (CF) is one of them. CF is a condition in which the body produces a large amount of thick mucous that prevents other organs to do their job.

This condition forces people to be raised in hospital settings and to be surrounded primarily by adults. With this doing, these kids mature quicker and are extremely knowledgeable. This essay will begin by talking about Cystic Fibrosis as a whole (what are the causes, the symptoms, the diagnostic tests and the treatments). Following, will be how families affected with this condition cope and the resources available for them.

Cystic Fibrosis is a fatal genetic disorder without a cure that affects children and young adults. This disorder occurs when a child inherits two abnormal genes from their parents. This genetic condition is diagnosed in a multiple step process. It begins with newborn testing which is done in the first few days of life by placing a few drops of blood from a heel prick onto a special card, then is sent to the laboratory for testing for genetic conditions such as CF. It is followed by a sweat test that measures the amount of chlorine in the patients sweat.

Thirdly, there’s a carrier testing that’s done to test for abnormal genes. According to Cystic Fibrosis Canada, “when both parents are carriers of the Cystic Fibrosis gene, there is a 25 percent chance that their child will have the disorder, a 50 percent chance that the child will be a carrier and a 25 percent chance that the child will not have the condition or be a carrier”.

Lastly, an evaluation is done by a CF Foundation-accredited care center. Cystic Fibrosis affects multiple organs, including your lungs and pancreas. In the lungs, there is a production of thick mucous that blocks the airways and can trap germs. For this reason, people living with CF need to have minimal contact with germs because it can lead to infection. Also, people with CF must keep a distance of six feet between each other because germs can be spread by coughing or sneezing and travel a maximum of two meters. In the pancreas, the thick mucous prevents the pancreas from releasing enzymes that help the absorption of nutrients which leads to weight loss or inability to gain weight. In the liver, the thick mucous blocks the bile duct which can lead to liver disease. Someone living with CF (Cystic Fibrosis) will also experience signs such as “persistent cough, wheezing and shortness of breath, salty skin and sweat, intestinal obstruction and oily stool, infertility in men and decrease fertility in women (Cystic Fibrosis Canada, 2019)”.

The treatment plan for people living with CF is very unique to every person. The treatment components included “airways clearance, nutritional therapy, fitness plan and oral, inhaled or nebulized medication (Cystic Fibrosis Foundation).” Airway clearance can be done by promoting coughing and huffing (taking a deep breath in, holding it in and actively exhaling), chest therapy which includes percussion (clapping the chest wall), vibration and gravity to loosen and remove secretions. Basic lung care and airways clearance techniques are also used to promote airway clearance.

There are medications such as mucus thinners and antibiotics (for infection in the chest cavity) that is also provided to people with CF. Pancreatic enzyme supplements are often provided to help to absorption of important nutrients and are taken every meal or snack. A fitness plan is used to help the increase of energy, lung function and overall health. Lung transplant and clinical trials are also possibilities for Cystic Fibrosis patients. There is a lot of research getting put into this disease to create new treatment and to eventually (hopefully) find a cure.

Cystic Fibrosis (CF) does not only impact the person living with this condition but the entire family. It is found that “families living with CF are not deprived of the essentials of living but aren’t able to maintain their usual pattern of family relationships (Turk 1964).” Taking care of a child with CF decreases their time and energy between spouses and their other children. Turk 1964, states that “it has an affect on their communication between each other regarding family issues.” There is also an increase in stress and anxiety which can lead to bigger problems like depression (Cystic Fibrosis Foundation).

One of the best ways, according to parents taking care of a child with CF, is to stay organized. These parents stay organized by having a schedule which includes: respiratory treatment, time for nutrition and airway clearance, time for rest, other children and spouse. There are other ways parents avoid being overwhelmed like paying the bills, medication and insurance as soon as the forms arrive and learn as much as they can about Cystic Fibrosis including the complications that might occur.

Another way to minimize stress and fatigue is to accept help when it is offered and to be specific with how family and friends can help (doing groceries, cleaning the house). It is also important that parents communicate and befriend other parents going through the same thing because they can support each other, give tricks to one another and insures that they are not alone.

There are many resources for parents who are taking care of someone with CF. For instance, Cystic Fibrosis Foundation is a website that contains a variety of information about CF, the many ways a parent can cope and resources to help parents. There are also assisted services like ‘Compass’ that can help parents with their insurance, financial, legal and other issues their facing. Cystic Fibrosis Canada also provides information about how to travel with someone with Cystic Fibrosis, information for teachers and professors and summer care tips. Lastly, there are support groups, not only for the patient but for the parents as well. These support groups allow parents to voice their experiences, challenges and emotional issues which can give them hope and reduce their sense of feeling alone.

To conclude, Cystic Fibrosis is a chronic genetic condition that is currently only affecting 70,000 people worldwide. It is a condition that requires constant monitoring and treatment. There are many resources to help families cope with taking care of someone with Cystic Fibrosis. In 2019, a movie was released about two teenagers living with Cystic Fibrosis and it has increased the awareness about this chronic condition. CF is a little to know condition therefore a lot of research is presently being done. The researchers have made tremendous advances to improve the health and quality of life of people living with CF and brings them one step closer to finding a cure to Cystic Fibrosis.