In this study, perceptions of adults with Friedreich's ataxia regarding transitional events were described. Across the lifespan, key transitional events mark important points when one's life course is significantly altered. Qualitative interviews were used to elicit information regarding transitional events and data was analyzed using an iterative process to identify common themes. Forty-two adults between eighteen and sixty-five years were interviewed. Overall, transitional events were either a direct outcome of Friedreich's ataxia, or a developmental task altered by having the condition. Events were a reflection of the individual's experience with Friedreich's ataxia and often corresponded to clinical progression. One's awareness of symptoms, changes in mobility status and concern about falling were the most salient themes from the experience of living with Friedreich's ataxia. Developmental events influenced by the condition were one's primary relationships and life's work. Both Friedreich's- and developmentally-related transitions affected self-image, life activities, and future planning. The severity of the condition and age contributed to the nature of each identified event. Participants reported using both emotion and problem-based coping strategies during transitional events. These results, as well as data obtained from participants about experiences with health care providers, help to alert professionals of potentially challenging times in patients' lives, which are subtly or profoundly influenced by chronic illness or disability and suggest areas for further research. Implications for developmental counseling approaches, which emphasize key transitional events, were suggested for genetic counseling. These results will be written up for qualification for a master's degree in Health Policy and Management from the Bloomberg School of Public Health, Johns Hopkins University. They will also result in two professional publications.
