After her infant son suffered due to a succession of medical errors, Sue worked tirelessly to prevent this from happening to others, starting by writing letters to the health care regulatory bodies until she and a group of mothers had formed a nonprofit and put out guidelines for the regulatory bodies to follow. In the midst of all of this, Sue’s husband was misdiagnosed as having a benign tumor, when it was later discovered to be a malignant sarcoma. With this she redoubled her efforts to lead us to a safer health system.
Andrea Downing is living with a BRCA1 mutation, which puts her at a high risk for cancer, the same disease that she saw her mother and grandmother endure. Although at first her diagnosis created a pervading feeling of loneliness, Andrea has found a group on Facebook, the BRCA Sisterhood support group, to share information and break through the isolation. But as much as Andrea praises her own and other patient community groups, she worries that social media hosts, such as Facebook, pose a threat to the safety of these groups and their health data. In this episode, Andrea talks about what it means to be a previvor, how her Sisterhood empowered her, and where she is now in the fight to secure patient community groups.
In the second episode for YJBM’s Clocks and Cycles Issue, Huaqi and Wei interview Xiaoyong Yang, an expert on the interactions between the circadian clock and metabolism. For more information about YJBM or to read the Clocks and Cycles issue, visit medicine.yale.edu/yjbm