Cystic fibrosis (CF) is an inherited and chronic disease related to a defect in the cystic fibrosis transmembrane conductance regulator (CFTR) gene. Patients produce an abnormally high amount of sticky and thick mucus that accumulates around the organs, including the lungs, making it difficult for patients to breathe properly and more likely to develop infections. Symptoms are different for each patient but tend to include persistent coughing, wheezing, breathlessness, exercise intolerance, repeated lung infections, inflamed nasal passages or a stuffy nose, foul-smelling and greasy stools, poor weight gain and growth, intestinal blockage, and severe constipation.
However, in addition to the physical symptoms, both patients, family, friends and care givers face an emotional burden associated with the disease. Being a progressive disease, dealing with cystic fibrosis can involve a stressful routine of symptoms and treatments. The CF community may face numerous psychological and social problems due to the demands of the disease, which need to be addressed with as much importance as its physical burdens.
Emotional Wellness of Children or Adolescent CF Patients
The lives of children diagnosed with cystic fibrosis can be very different from the ones of healthy children, with great demands regarding feeding, treatments, and regular procedures like blood tests and cough swabs. Behavioral challenges are often accompanied by the feeling of being different. “However, feelings of being different are understandable, perhaps inevitable, especially in the school environment. As well as having a different diet and an awkward treatment regime, children with cystic fibrosis are often smaller and thinner than their peers, which can give rise to bullying,” explains the Cystic Fibrosis Trust.
The impact of body image stereotypes may be a problem for patients growing up with the disease. Puberty and the onset of menstruation may be delayed a year or two, for example, while as patients grow into teenagers, a feeling of frustration may arise from the independence and responsibility of taking care of their treatments. Patients may need to skip school at certain times given the higher incidence of infections and disease exacerbations, and it is also common for pediatric patients to feel anxiety, insecurity or depression due to the lack of control of determined aspects of their lives. In addition, it is important to care givers to pay attention to patients that might neglect their treatments as a way of not feeling so different.