Name(s) of Faculty Adviser/Mentor
Dr. Charles Wilson
Cystic Fibrosis (CF) is an incurable genetic disease resulting from mutations in the cystic fibrosis transmembrane conductance regulator (CFTR) gene. The lack of this gene’s protein product makes cells unable to transport chloride ions to their surface, leading to a lack of water in the mucous membranes and causing mucus to become abnormally viscous. Complications derive from ducts in the body becoming clogged with this sticky mucus, resulting in early death in patients (background source: Cystic Fibrosis Foundation https://www.cff.org/What-is-CF/About-Cystic-Fibrosis/). This research discusses the personal struggles of CF sufferers to lead normal, fulfilling lives in the face of certain death utilizing primary sources that detail their social stories. These sources include background information (“Cystic Fibrosis: History.” https://www.nationaljewish.org/conditions/cystic-fibrosis-cf/history) to provide a brief history of the disease and how patients were generally viewed, but predominately consist of interviews conducted as part of studies (papers by Tuchman et al, Kirk et al, Jamieson et al, and Horky et al). Interviewee age ranges from young children to late adolescents. The studies reveal how these age groups must find a balance between coping with their chronic, life-threatening symptoms and participating in the social and personal growth activities that are an integral part of childhood development. Patients often struggle with self esteem issues caused by their symptoms, and treatment often consumes enough time that normal activities must be put aside. However, the non-contagious nature of the disease means that family and peers are much less hesitant to be in contact with CF patients than other illnesses. This means that support is readily available for the patients, which significantly reduces their suffering and allows them to lead relatively normal lives.