Intersex / Disorders of Sex Development
Intersex / Disorders of Sexual Development (DSD) is a broad term for a large group of conditions in which external genitalia, internal reproductive organs, or hormonal sex and sex chromosomes do not fall into the distinct binaries of male or female. Intersex/DSD conditions may be identified at birth but may also emerge at later developmental stages, often around the time of puberty. This guide provides general background resources as well as resources that discuss the specific challenges for affected individuals, parents/caregivers, and healthcare professionals. Some resources may require USC login.
Where do I start?
To obtain general background information, view the resources listed in the Background and Educational Resources boxes.
After that, take a look at the other boxes on this page that provide further information on specific issues related to DSD conditions, such as healthcare at different life stages, quality of life, hormone replacement, psychosocial issues, etc.
Intersexion
JOIN US!!!
Thursday, April 14, 2016 : 5:30 - 8pm
USC Health Science Campus
Hastings Auditorium @ Hoffman Medical Research Building (HMR) campus map
Free pizza, cookies, & bottled water
Discussion to follow
Runtime: 52 min.
The first question any new parent asks… “Is it a boy or a girl?” What if it’s neither? 1 in 2,000 babies is born with genitalia so ambiguous that the doctors cannot easily answer this question. In this groundbreaking documentary, intersex individuals reveal the secrets of their unconventional lives – and how they have navigated their way through this strictly male/female world, when they fit somewhere in between (Intersexion).
Free admission - Click here to RSVP.
RSVPs are required however do not guarantee a seat.
All Filmology events are OVERBOOKED to maximize seating capacity in the theater.
The RSVP list will be checked on a first-come, first-served basis until the theater is full. Once the theater has reached capacity we will no longer be able to admit guests, regardless of RSVP status.
Evening Agenda
5:30-5:55pm Doors Open / Pizza Served
5:55-6:00pm Welcome / Bios
6:00-6:55pm Film Screening (52 min)
6:55-7:00pm Short Q&A
7:00-8:00pm Audience Discussion
Background
Click here to access the full tutorial created by the Erasmus Medical Center Rotterdam, that provides a step-by-step guide to the principles of sex development and conditions currently referred to as Disorders of Sex Development (DSD).
Galileo's Middle Finger by Call Number: Leavey Library, Q175.35 .D74 2015Publication Date: 2015-03-10
Making Sense of Intersex by Publication Date: 2014-04-24
Bodies in doubt : an American history of intersex by Call Number: Doheny Library, RC883 .R45 2009Publication Date: 2009-05-08
Fixing Sex by Publication Date: 2008-11-11Not available at USC.
Educational Resources
- Erasmus Medical Center Rotterdam Web based ModelThis web based model is meant for students, clinicians (in training), scientists, patients and caretakers to understand the principles of sex development and conditions currently referred to as Disorders of Sex Development (DSD). This tool provides visually based information represented in a structured, clear and understandable format.
- SickKids - Sex Development: An OverviewAn interactive demonstration of sex development including movies, diagrams, and illustrations to help individuals understand how and why DSDs happen.
Literature from the Working Party on Disorders of Sex Development
- Lee, P. A., Houk, C. P., Ahmed, S. F., & Hughes, I. A. (2006). Consensus statement on management of intersex disorders. Pediatrics, 118(2), e488-e500.The 2006 Consensus Statement that resulted from the first working groups organized to review and answer specific questions concerning the management of patients with DSDs.
Literature from the March 2014 National Institute of Child Health and Human Development Workshop
- March 2014 NICHD WorkshopClick on the link to access a list of citations to 15 articles published in Hormone and Metabolic Research (2015). The articles correspond to presentations made at the March 2014 NICHD workshop and cover a range of issues.
Global Perspective
Journals
Below you will find links to journals that include literature about Intersex/DSD. This list is not exhaustive.
News Articles
- Understanding Intersex: The Call For Leaving Bodies BeNPR Interview with Tiger Devore who is featured in the Intersexion documentary.
- Born in Between2015 Buzz Feed article that discusses Should Doctors Operate On Intersex Babies?
- Categorical Denial2015 Article in UCLA Health's U Magazine about UCLA researchers studying the biological origins of sexual orientation and gender identity.
- When a child is born neither boy nor girl: Straddling the gender divideNorthwestern University’s journalism students' news story, accompanied by short patient videos that discuss health issues that arise from Intersex/DSD.
- Declaring With Clarity, When Gender Is AmbiguousA conversation from 2005 with Dr. William Reiner, a leading specialist in the treatment of children with intersexual conditions.
- The True Story of John / Joan1997 Rolling Stone article by John Colapinto, author of "As Nature Made Him", the story of David Reimer.
Intersexion - Trailer
- IntersexionOfficial film website.
Patient Perspective
- Personal Stories of People with an Intersex DiagnosisClick on the link to access a list of citations to over 20+ personal narratives and 4 commentary articles published in Narrative Inquiry in Bioethics (2015).
Lessons from the Intersexed by Call Number: Doheny Library, RC883 .K47 1998Publication Date: 1998-07-01
Parent / Caregiver Perspective
- Handbook for ParentsAccord Alliance / Consortium on the Management of Disorders of Sex Development.
Gender Identity
Critical Intersex by Publication Date: 2009-10-28
Psychosocial Issues
Quality of LIfe
Hormone Replacement
Fertility
Moderators
Michael Kreuzer, M.D.
Dr. Michael Kreuzer is a graduate of Johann Wolfgang Goethe University Medical School in Frankfurt, Germany. He served his residency at LLUMC in Emergency Medicine and later completed a Fellowship in Addiction Medicine. He has worked with transgender patients in both primary care and specialty settings.
Johanna Olson-Kennedy, MD is an Adolescent Medicine physician specializing in the care of gender non-conforming children and transgender youth. Board certified in Pediatrics and Adolescent Medicine, Dr. Olson-Kennedy has been an Assistant Professor at Children’s Hospital Los Angeles for the past ten years. She has been providing medical intervention for young adults including puberty suppression and cross sex hormones for the past six years, and is considered a national expert in this area. Click here to learn more about Dr. Olson-Kennedy.
Pediatric Care
- Access Medicine - List of TextbooksAccess Medicine list of textbooks covering treatment practices for a variety of disciplines including: internal medicine, endocrinology, urology, surgery, psychology and more.
- Clinical Guidelines for the Management of Disorders of Sex Development in ChildhoodAccord Alliance / Consortium on the Management of Disorders of Sex Development
Care for Adolescents and Adults
Surgery
Intersexuality and the Law by Publication Date: 2011-12-01
Clinical & Research Networks
- I-DSD RegistryThe International DSD Network and Registry
- Disorders of Sex Development Translational Research NetworkTen medical centers across the USA that are studying the genetic causes and the psychological consequences of DSD.
- DSD - Lifedsd-LIFE is a European consortium that aims for sustainable improvement of clinical care for DSD patients. Working groups have been established to look into the areas of psychosocial adaption, HRQOL and psychological well-being, psychosexual development, surgery, hormones and metabolism, patients’/parents’ view, ethics and cultural context.
Organizations / Support Groups
- Intersex Society of North AmericaISNA was formed in 1993 as the first support group for individuals with DSDs. They are a resource for basic information about DSDs and for how to improve the health care and overall well-being of people with DSDs.
- Accord AllianceAccord Alliance’s mission is to promote comprehensive and integrated approaches to care that enhance the health and well-being of people and families affected by DSD by fostering collaboration among all stakeholders.
- interActinterAct advocates for the human rights of children born with intersex traits through the use of innovative legal and other strategies.
- Intersex Initiative (IPDX)Intersex Initiative (IPDX) is a Portland, Oregon based national activist and advocacy organization for people born with intersex conditions.
- Bodies Like OursLink is currently not working.
- OII Australia - Intersex AustraliaOII Australia is an independent support, education and policy development organisation, by and for people with intersex variations or traits.
- The UK Intersex AssociationThis site contains information about all aspects of Intersex and is intended to inform and educate.
- dsd FamiliesAn information and support resource for families with children, teens and young adults who have a DSD.
- DSD Support GroupsClick the link above to access a list of DSD support groups.