Granulomatous Mastitis Is Not as Benign as You Might Think: What Doctors Need to Know about the Lived Experience of People with This Rare Disease.

INTRODUCTION: Granulomatous mastitis (GM) is a rare, benign disease characterized by painful inflammation, and abscesses typically on only one breast. Treatments include antibiotics, steroid treatments, and surgery, but there is no cure. The current study was designed to assess patient perceptions of living with the disease and what they would like physicians to know about their needs.

METHODS: The advent of the internet has enabled patients with rare conditions to reach out to support each other. Participants on a GM patient only Facebook site were asked if they would be willing to complete an anonymous survey regarding their experiences living with the disease. They completed a demographic survey, as well as measures of their pain and discomfort, psychological state, and social support.

RESULTS: The results indicated that patients with GM believe they need more help managing their pain discomfort and fatigue. They also report significant levels of depression and anxiety suggesting that they could also benefit from more psychological support.

DISCUSSION: Living with this painful, disfiguring disease for which there is no cure has a negative impact on people's mental and physical well-being. Practitioners who treat people with GM should consider providing their patients with specific pain management options, strategies for coping with fatigue and referrals to mental health practitioners who specialize in coping with chronic disease. Such efforts would help improve patient's quality of life and ability to cope with this "benign" but life altering disease.