An information and support resource for families with children, teens and young adults who have a DSD
Medical and Psychological Information
As parents we need to make informed decisions about the care of our children, often with little or no preparation. Therefore, making the complex medical and psychological information regarding DSD diagnosis and management more easy to absorb, is a big priority.
We identified a series of topics, enlisted the help of expert clinicians and asked to explain in accessible language the current best practice. We will continue to work with clinicians worldwide to develop this series. We are very grateful to all clinicians who have contributed.
Please note that the review of Medical Info is on-going.
Parents have of course a chance to comment on this information, and to describe how they approached difficult decisions and situations. You can contact us by email to submit a specific comment on a chosen topic.
Although the inclusion of psychological care as a fundamental aspect of DSD care is widely accepted, it remains difficult to find contributions that approach psychological care in a hands-on, practical way.
As you read through the various medical notes (as well as the personal experiences) we have listed below, please keep in mind that:
A. The complexities of DSD mean that babies can 'present' in a same way (i.e. look the same when they are born), but their individual diagnosis might require a very different management. As parents we can share the same experiences and feelings, whilst remaining open-minded that the development and care for our kids might be very different.
B. There are different ‘entry points’ to one's DSD journey: E.g. prenatal diagnosis, a baby born with genitals that look different, a child presenting with a inguinal hernia, an undiagnosed girl who develops a hormonal imbalance at puberty, or an adolescent who is not getting her periods.
c. Gender assignment and gender identity are two different things: gender assignment is the gender in which a child is raised. The gender identity is how our kids think of themselves, boys or girls. In the great majority of situations, the gender assignment was made thoughtfully in infancy and the child will grow up with a gender identity that matches the assigned gender. Some children may not feel comfortable with the gender they were assigned. This does not mean that anyone made a mistake, just that things turned out differently from the initial observations and decisions. With love and support, families can successfully go through this experience.
Anticipatory time line for the medical care of DSD children and young adults
- Faisal Ahmed, Paediatric endocrinologist, Glasgow (UK)
Who’s Who in the Medical Team
- John Achermann, Paediatric Endocrinologist, UCL Institute of Child Health and GOSH, London (UK)
- Sarah Ehtisham, Paediatric endocrinologist, Manchester (UK)
Surgery in infants and children with DSD
- Imran Mushtaq, Paediatric Urologist, London (UK)
Surgery in boys
- Stuart O'Toole, Paediatric Urologist, Glasgow (UK)
- A Parent's comment on 'Surgery in boys'
Management of gonads in DSD
- Martine Cools, Paediatric endocrinologist, Ghent (Belgium)
When does Osteoporosis start to matter?
- Justin Davies, Paediatric endocrinologist, Southampton (UK)
A beginner's guide to sex hormone replacement
- Tim Cheetham, Paediatric endocrinologist, Newcastle (UK)
What should parents know about vaginal hypoplasia?
- Sarah Creighton, Gyneacologist, London (UK)
- A Parent's comment on vaginal hypoplasia
Explaining DSD to family members in case of an inherited link
- Catherine McWilliam, Clinical Geneticist, Aberdeen (UK)
- (Contribution Forthcoming)
The relevance of understanding the genetics and the pattern of inheritance of DSD for patients and members of the extended family
- Trevor Cole, Clinical Geneticist, Birmingham (UK)
Engaging confidently with doctors
- Arlene Baratz, MD, AIS/DSD Parent Support Group, Pittsburgh (USA)
Genital examination: when and how? (What I Learned from Jodie)
- Charmian Quigley, Paediatric Endocrinologist, Indianapolis (USA)