Genetics' Influence on Patient Experiences with a Rare Chronic Disorder A Photovoice Study of Living With Alpha-1 Antitrypsin Deficiency

ArticleinNursing Clinics of North America 48(4):627-36 · December 2013with25 Reads
Impact Factor: 0.84 · DOI: 10.1016/j.cnur.2013.09.008 · Source: PubMed

Patients with rare chronic disorders and their caregivers increasingly form communities to support and exchange social experiences. Because up to 10% of the United States population is affected by one of 5000 to 6000 rare disorders, efforts to understand the individuals and affected communities are important. This study was conducted using community-based participatory research approaches within a community of patients and caregivers living with alpha-1 antitrypsin (AAT) deficiency. Patient populations at some risk for lung transplant include individuals who smoked cigarettes and patients who underwent liver transplant in infancy and later adulthood due to accumulation of misfolded AAT within hepatocytes.