Mayer-Rokitansky-Küster-Hauser (MRKH) Syndrome is a congenital birth defect characterized by absence or incomplete development of the Müllerian-derived tissues of the female reproductive tract that is associated with renal, skeletal, cardiac, spine and ear anomalies. Affected Individuals often experience isolation, loneliness, shock and depression and MRKH can affect self-esteem and increase the risk of eating disorders and phobic anxieties. In 2017, we conducted an online anonymous survey of 1337 patients, parents, partners and providers on their experiences with MRKH through diagnosis and treatment, to better understand the effects of MRKH on sexuality, relationships and mental health. This survey indicated that people with MRKH experience sadness, fear, shock and shame during diagnosis and treatment. Respondents indicated that access to health care providers who had knowledge of MRKH eased their experience and that involvement in online support groups gave them a sense of community. The purpose this study was to analyze this patient-centered data to determine future MRKH research priorities.
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