Naz Karışık

Cystic Fibrosis, which increases mucus secretion and accumulation by mutation in CFTR; is defined as a disease that prevents patients from breathing. Since this genetic disease does not have a definitive solution yet, it becomes a part of people's lives rather than a short period in which people can get rid of it quickly, and a new way of life is created based on fighting the disease. 

 

This new lifestyle also affects the social life and psychology of patients and their families. It is known that depression and anxiety are common in many cystic fibrosis patients. According to a study, it was seen that 10% of young people with cystic fibrosis, 19% of adults, 37% of mothers of children with cystic fibrosis and 31% of fathers have depression. In anxiety, these rates were 22% in young people, 32% in adults, 48% in mothers and 36% in fathers. This state of constant anxiety and depressive mood is caused by the gradual decrease in lung functions, the need for hospitalization, essential financial expenses, difficulty in accessing drugs, and a sense of helplessness. 

 

These concerns of both patients and their families can also cause some intra-family communication problems. There may be situations such as the fact that families worry about their children and their future, often without revealing it to their children, that children perceive it as if they are hiding something from them, that children cannot fully talk to their families about how they feel because they have a genetic mutation, and there may be tension in relationships. The only communication problem is not seen with their families. 

 

Cystic fibrosis patients may feel as if there is a barrier between them and the people in their relationships, and they may approach distances from human relationships due to the symptoms of the disease. Regardless of age, we can talk about the existence of this state of withdrawal and introversion, but especially when it is considered in terms of children, not being able to make sense of what they are experiencing due to their younger age, feeling strange when comparing oneself with other friends and peers, shyness, questioning why they seem younger or shorter than their peers, introversion and withdrawal. incompatibility problems are more possible. In addition to the complexity created by this internal questioning, this becomes even more difficult for them to cope with, given the possibility that young children are exposed to being bullied under peer bullying. Both adults and children may decide to avoid making friends and live a more solitary life, and a more antisocial lifestyle may be seen. 

 

According to a study conducted by Macedonian researchers with cystic fibrosis patients, aggressive attitudes can be observed in bilateral relations in children with cystic fibrosis and self-esteem may be lower due to the delay in pubertal changes. When it is considered for adults, it can be seen that not feeling equal with other people, low self-confidence, desire to stay behind in business life, boredom, worries about marriage or relationships. Cystic fibrosis is a disease that also affects sexuality. It can increase sexual dissatisfaction and cause infertility in men. Therefore, in adults, it can also affect their dreams of having children and starting a family. On the other hand, patients with cystic fibrosis must have a special diet to avoid malnutrition. Since cystic fibrosis affects not only the lungs but also the pancreas and digestion, nutrition is an issue that requires attention and affects the social life of the person. In the past, it was thought that patients with cystic fibrosis should not consume fat, and it was observed that patients became weaker when this was applied. Later, through a study in Toronto, it was understood that when patients were given fatty foods, their weight gain was fine and that patients with CF should consume foods containing more calories than normal. At this point, problems such as social and psychological concerns such as being thin and being liked, refusing to eat more calories or not applying it, or patients who refuse to eat, regardless of gender, can be seen.

 

Considering all these factors, all of us as individuals should be able to help and empathize with people who have some special needs and rare diseases as much as we can. We should not forget that a mutation that causes a genetic disease can happen to anyone one day, that this is not an abnormal, but a normal situation, and we should help them on their journey in a way that will make their life as easy as possible.