An information and support resource for families with children, teens and young adults who have a DSD
Please find selected articles that highlight some practices and information that are beneficial to families. If you are a clinician in this field, and you would like to add to this list, don't hesitate to contact us on email@example.com
- Clinical Intervention and Embodied Subjectivity: Atypically Sexed Children and their Parents , Katrina Roen, in ‘Critical Intersex’, Morgan Holmes (ed), Ashgate Press 2009
DSD: A Guide for Parents and Physicians
A new book written by members of Oklahoma City SUCCEED team: Disorders of sex development: A Guide for Parents and Physicians. (Available in Paperback and in Kindle format)
Disorders of Sex Development: A Guide for Parents and Physicians is the first book written by experienced team members who understand families’ confusion and fear when their child is diagnosed with a DSD. They achieve their goal of empowering families through education about biological and psychosocial aspects of DSD with gentle and concise prose. Beginning on the first page with reassurances of affected children’s future health and happiness, the authors provide clear descriptions of how DSD conditions arise, accompanied by excellent diagrams and illustrations. Clarifying diagnosis and treatment, major issues such as gender, sexuality, and potential gender transition are addressed in a direct and practical manner that demystifies these difficult topics so parents and clinicians can focus on what is best for each individual child. The authors place special focus on discussing the value of peer support, with inclusion of contact information for high-quality peer support groups. Respecting families’ values and culture, treatment options are presented without bias. Acknowledging that differences of opinion with clinicians may arise, the book provides unique, sensible advice for preserving relationships while achieving satisfactory resolution. (Reviewed by Arlene Baratz, moderator of the AISDSD Parent Email Group)
Holistic Management of DSD, Brain, C. et al, in: Clinical Endocrinology & Metabolism24: 335-354 (2010).
Abstract: Disorder of sex development (DSD) presents a unique challenge, both diagnostically and in terms of acute and longer-term management. These are relatively rare conditions usually requiring a multidisciplinary approach from the outset and the involvement of a tertiary centre for assessment and management recommendations. This article describes the structure of the multidisciplinary team (MDT) at our centre, with contributions from key members of the team regarding their individual roles. The focus is on the newborn referred for assessment of ambiguous genitalia, rather than on individuals who present in the adolescent period or at other times, although the same MDT involvement is likely to be required. The approach to the initial assessment and management is discussed and the subsequent diagnosis and follow-up presented, with emphasis on the importance of careful transition and long-term support.
Disclosing Disorders of Sex Development and Opening the Doors, F. D'Alberton, in: Sexual Development, published on-line 21 July 2010
Abstract: This paper focuses on the importance of full disclosure in disorders of sex development (DSD), as a universal human right and closely related to informed consent. Full disclosure is not only a way of communicating a diagnosis, it is a methodological constant that permeates all the clinical moments expressed by a multidisciplinary team. As stated by The Chicago consensus, DSD should be referred to specialized centers of excellence. In these centers provided with the necessary multidisciplinary team that is able to: provide knowledge, skills and experience; deliver quality and care, and cope with the emotional barriers that often hinder the practice of full disclosure. Full disclosure is important when a person is informed about something, can participate in making a decision or is advised about something that needs to be done before he/she will be able to make a choice. However, if a person is informed about something that was done unnecessarily and could have been postponed until he/she could have been involved in making the decision, full disclosure can be seen as deception colored by rage, sorrow andregret.
- When to Tell the Patient, by Charmian Quigley, presented at the Lawson Wilkins Pediatric Endocrine Society and Pediatric Academic Societies Mini-Course on Disorders of Sex Development (DSD) - When To Tell the Patient? (May 2009). Presentation posted on the Accord Alliance website.
Genital Surgery for Disorders of Sex Development: Implementing a Shared Decision-Making Approach, Katrina Karkazis et al, in: Journal of Pediatric Endocrinology & Metabolism, 23, 789-806 (2010),
Abstract: Ongoing controversy surrounds early genital surgery for children with disorders of sex development, making decisions about these procedures extraordinarily complex. Professional organizations have encouraged healthcare providers to adopt shared decision-making due to its broad potential to improve the decision-making process, perhaps most so when data are lacking, when there is no clear "best-choice" treatment, when decisions involve more than one choice, where each choice has both advantages and disadvantages, and where the ranking of options depends heavily on the decision-maker's values. We present a 6-step model for shared decisionmaking in decisions about genital surgery for disorders of sex development: 1) Set the stage and develop an appropriate team; 2) Establish preferences for information and roles in decisionmaking; 3) Perceive and address emotions; 4) Define concerns and values; 5) Identify options and present evidence; and 6) Share responsibility for making a decision. As long as controversy persists regarding surgery for DSD, an SDM process can facilitate the increased sharing of relevant information essential for making important health care decisions.
- Peer support a lifeline for many with DSD, Anne Tamar-Mattis, JD, Endocrine Today, October 1, 2010
The ESPE e-learning webportal "Pediatric Endocrinology"
This professional webportal gives access to an interactive learning environment for up to date pediatric endocrinology. Through this webportal medical students, residents, fellows, specialists, consultants and teachers from around the world, meet each other to gain, share, contribute and develop knowledge in an accessible and flexible way. So far 3 major themes have been developed: Growth, Puberty and DSD.
- Clinical Guidelines for the management of disorders of sex development in childhood
Disorders of sex development (DSDs), their presentation and management in different cultures, Warne GL, Raza J., Department of Endocrinology and Diabetes, Royal Children's Hospital, Melbourne, Australia. Rev Endocr Metab Disord. 2008 Sep;9(3):227-36. Epub 2008 Jul 17.
Abstract: The way disorders of sex development (DSD) are viewed and managed in different cultures varies widely. They are complex conditions and even well-educated lay people find them difficult to understand, but when families are very poor and lacking in basic education, and the health system is starved of resources, traditional beliefs, folk remedies and prejudice combine to make the lives of children and adults with DSD extremely difficult and sad. Rumour and discrimination isolate them from their communities and they become devalued. People with DSDs desire the same things in life as everyone else-to find someone who will love them, to be valued as human beings, to feel at home in their own bodies, to be able to have satisfactory sexual relations should these be desired, to be able to trust their medical advisers and to be integrated into the general community. Long term outcome studies have been published from many countries, but these studies have not necessarily been critical of the values that underpinned the type of treatment given to the patients. There is a need for standardized instruments that would allow a true comparison of the quality of outcomes from the patients' perspective. Much could be done to improve equity between rich and poor countries for the benefit of people with DSDs. A focus on developing cheap, robust diagnostic tests, making essential medicines available for all, training surgeons to do better operations, educating health professionals, families and the general community in order to break down prejudice against people with DSDs, and training mental health workers in this specialized field, would do much to alleviate the burden of the condition.
Inter/Act is an American project led by young people with DSD/intersex conditions, ages 14-25.
‘In 2012, we started a series of conversations about what we wish our doctors knew, and what we are
glad our doctors knew. We’re sharing that with you, and we hope you’ll pass it on.’’
The brochure, based on these conversations, is available here.
Some of this will make for uncomfortable reading both for parents and members of the care team …but young people’s voices are not heard enough, and so we are passing it on.
- In 2013 Dr. Lih-Mei Liao (Cons. Clin. Psychol., UCLH, London) and Margaret Simmonds of AISSG UK will have a chapter, 'Counselling Clients Affected by Diverse Sex Development' published in a book titled Getting the Message Acrosss: Communication with Diverse Populations in Clinical Genetics. Jennifer Wiggins & Anna Middleton (Eds), Oxford Univ. Press. The book can be pre-ordered on Amazon .