Guest editorials

We are inviting guest editorials from families, members of our care team, and others who work or write on issues that affect us. If you wish to contribute to this series, please send a short outline of your proposed guest editorial to info@dsdfamilies.org

Guest Editorial nr 3, January 2012, Here’s to a happy engagement!

by Stenvert L.S. Drop MD, PhD; pediatric endocrinologist and chairman scientific advisory board AISNederland

AISNederland offers support in the broadest sense to women with androgen insensitivity syndrome and related conditions. The Dutch support group was established in 2001 and has just celebrated its 10th anniversary. Meetings are held 2-3 times per year with separate and specific attention for adolescent girls, adult patients and parents. Most recently AISNederland has taken the first steps to admit also AIS boys and their parents as members. AISNederland is a fully independent organisation, receiving limited governmental support. A part of every meeting is dedicated to brief expert talks and on several occasions I have been asked to give short presentations and to answer questions.

In 2008 three members of the board of AISNederland contributed to a special issue of a medical journal for Dutch paediatricians (Tijdschrift voor Kindergeneeskunde) devoted to DSD. They explained the main aims of AISNederland and also discussed the specific issues that patients with DSD are confronted with. Moreover, they emphasized that of the 5 G’s (in Dutch language) genitals, genes, gender, the most important G’s are of ‘gezondheid’ and ‘geluk’: health and happiness.

In order to improve knowledge on health and other medical aspects on DSD, AISNederland has asked members of the various DSD Centers in the Netherlands to form a scientific advisory board. This has now been in existence for more than 2 years. The board consists of pediatric endocrinologists, psychologists, urologists, endocrinologists and gynaecologists. Subject of discussion has been the organisation of care at the national level and transition to adult care. The scientific advisory board has an important role in exchanging relevant information and discussing openly issues of mutual interest, as well as in handling media interest. Furthermore plans have been made to produce informative materials in the Dutch language.

I immediately agreed to become a member of the advisory board. The first meeting of the board was hosted at our hospital in Rotterdam. During my training in pediatric endocrinology at the Montreal Children’s Hospital in Montreal, Quebec, Canada in 1976-1978 I came into contact with intersex patients , as we called these conditions then. Most of my consultancies involved newborn children and their parents. It taught me in particular about the struggle that parents face in dealing with medical and psychosocial dilemmas. In the early eighties we started a multidisciplinary team at the Sophia Children’s Hospital, Rotterdam. Over the past 30 years several generations of pediatric endocrinologists, surgeons, urologists, psychiatrist/ psychologists have actively participated in this team. Over time, I have seen many changes. Up to mid-1990 there was a high level of secrecy and absolute taboo regarding intersex. The initial members of AISNederland have played a very important role in breaking down that taboo nationally. I have learned a lot from parents and patients telling me how they managed in day-to-day life.

The knowledge on genes, hormones and embryonic development is of significant importance, but often does not answer many of the questions with respect to clinical and psychological management. These two aspects are interconnected to such extent that every decision taken by a medical professional will always exert its influence on psychological wellbeing. Moreover there is a great need to understand the outcome of clinical and psychological management. Jointly with several Centres in the Netherlands we are in the process of evaluating outcome data. In order to make progress in the medical care of children and adults with AIS and DSD conditions we need to learn more about the biological and psychological factors that contribute to and influence gender and sex development, quality of life and general wellbeing.

Opportunities for positive and constructive engagement between the clinical and affected community are vital to this!