The cystic fibrosis is a genetic disease that affects about 1 baby 2500-2700 undermining the function of many organs and impacting heavily on the expectation and of those affected quality of life.
The genetic cause is a mutation that inhibits the production of a protein, leading to an anomaly in the transport of salts and causing the production of “dehydrated” secretions, therefore dense and not very flowing, which tend to accumulate in the organs, forming cysts and inflammation over time.
The respiratory system, airways, pancreas, liver, intestines and reproductive system are mainly affected by the effects of the disease.
To date there are no treatments, but only therapies aimed at slowing down the evolution of the disease , correcting pancreatic insufficiency and maintaining a good nutritional status.
According to what we know today, the lifespan of most people with cystic fibrosis depends on the evolution of the lung disease.
This evolution depends on a set of factors, which are only partially genetic, given that non-genetic factors such as the treatments practiced and the level of adherence to them, the environment in which the person with cystic fibrosis lives , are becoming increasingly important. and the lifestyle he adopts.
Given the great variety of combinations of these factors, each patient is different from the other, however for all patients prolonged treatments and the need to manage the disease on several fronts become important sources of stress .
Also for family members and caregivers the psychological impact of treatments, long hospitalizations as well as daily management, especially during the infancy of patients, is not a negligible aspect. In addition, the guidelines for the control of pulmonary infections, to which these patients are more easily subject, recommend isolation from other people with cystic fibrosis, effectively preventing mutual support and facilitating the feeling of exclusion.
Psychological support and psychotherapeutic intervention for those symptoms that can also occur in adulthood can positively affect the non-genetic factors that influence the course of the disease. In a recent scientific review on the subject, the various studies analyzed have highlighted the importance of an intervention commensurate with the age and needs of the patient that helps to manage the various aspects.
One of the most important is adherence and motivation to treatment , which with cognitive and behavioral interventions can be promoted by overcoming motivational blocks and encouraging functional behaviors. The chronic course of the disease can have important effects on the patient’s emotional world, such as the moment of discovery of the diagnosis in later life, with the awareness and the inevitable feelings of sadness or anger.
The goal of therapeutic support can also be ambivalence towards the numerous and frequent treatments that are important for health, but tiring and time-consuming.
We can often find emotions of anger or sadness that derive from the difficulty in carrying out a project with respect to one’s goals and passions, which can be seen as future goals perhaps not reachable or for which one can only see the ultimate failure and not the gratification. in itself to have a value to pursue.
Experiences of exclusion, the feeling of isolation and the tendency not to talk about one’s condition, preventing oneself from sharing emotions and suffering are frequent.
A psychotherapeutic support in this sense can help to overcome one’s beliefs both with respect to the reactions of others to this particular condition, and to the patient’s change of perspective towards his own future.
Depressive or anxious symptoms are naturally frequent , which can strongly affect the aforementioned adherence to treatment , effectively undermining the patient’s health and quality of life in general. A motivational approach can help in the first blocks of adherence to treatment, analyzing beliefs and directing towards greater functionality, both personal and relationship.
Cognitive-behavioral interventions aimed at symptoms and interventions of the so-called third generation of cognitive behavioral therapy , such as ACT and Mindfulness techniques, can favor the overcoming of problematic moments and promote an open and accepting attitude towards the disease and its repercussions .