title: The Lived Experience of MRKH: Sharing Health Information with Peers.
abstract: OBJECTIVE
  To examine the process and emotional effect of disclosing a personal diagnosis of Mayer-Rokitansky-Küster-Hauser syndrome (MRKH) to peers during adolescence and young adulthood.
  
  
  METHODS
  Qualitative study using semistructured telephone interviews.
  
  
  METHODS
  Nine women diagnosed with MRKH, aged 21-31 years, recruited via patient support groups.
  
  
  METHODS
  Motivators and barriers to self-disclosure of a diagnosis of MRKH to peers and partners.
  
  
  RESULTS
  Motivators to tell peers about a diagnosis included significant trust in the relationship (whether platonic or romantic), needing to unload the experienced burden of diagnosis, and a sense of responsibility to be forthcoming if a long-term romantic future was desired. The most common barrier to telling others was fear of rejection or being labeled a "freak." Although most participants did not receive guidance from a health care provider regarding approaches to sharing diagnostic information with others, almost all participants reported wishing they had received such counseling.
  
  
  CONCLUSIONS
  A diagnosis of MRKH elicits recurring anxieties about disclosure and the effect on relationships that are inadequately addressed by health care providers. Guidance and support on disclosure to friends and romantic partners should be provided whenever possible.
authors.affiliation: Department of Human Genetics, University of Michigan, Ann Arbor, Michigan. Electronic address: michelle.ernst@ynhh.org.
authors.forename: Michelle E
authors.initials: ME
authors.lastname: Ernst
authors.affiliation: Department of Pediatrics, University of Michigan, Ann Arbor, Michigan.
authors.forename: David E
authors.initials: DE
authors.lastname: Sandberg
authors.affiliation: Department of Human Genetics, University of Michigan, Ann Arbor, Michigan; Department of Pediatrics, University of Michigan, Ann Arbor, Michigan.
authors.forename: Catherine
authors.initials: C
authors.lastname: Keegan
authors.affiliation: Department of Obstetrics and Gynecology, University of Michigan, Ann Arbor, Michigan.
authors.forename: Elisabeth H
authors.initials: EH
authors.lastname: Quint
authors.affiliation: Department of Animal Sciences, Purdue University, Lafayette, Indiana.
authors.forename: Amy C
authors.initials: AC
authors.lastname: Lossie
authors.affiliation: Department of Human Genetics, University of Michigan, Ann Arbor, Michigan; Department of Pediatrics, University of Michigan, Ann Arbor, Michigan.
authors.forename: Beverly M
authors.initials: BM
authors.lastname: Yashar
mesh_terms: D058489:46, XX Disorders of Sex Development / Q000523:psychology*; D000328:Adult; D003142:Communication; D000013:Congenital Abnormalities / Q000523:psychology*; D005239:Fear; D005260:Female; D006801:Humans; D007398:Interpersonal Relations; D009095:Mullerian Ducts / Q000002:abnormalities*; D010379:Peer Group; D036301:Qualitative Research; D012650:Self Disclosure; D035502:Trust; D055815:Young Adult
keywords: DSD; Disclosure; Education; Guidance; MRKH; Peers; Support