Disorders of Sex Development
A long-term approach to care
Families can meet with all the specialists at the same time (if they wish) to talk through the long-term plan that will guide the child’s care in their early years. The team discusses all the surgical and treatment choices currently available for children and young people prior to you and your child coming to clinic. In the past, patients have often had corrective surgeries early in childhood and have then returned for hormonal treatment in adolescence.
Many conditions can have implications at puberty and beyond, and as children grow up they may have questions about their conditions, how to cope with them, and how decisions were made when they were younger.
You and your teenager also need to be aware of the risk of sexually transmitted infections and the importance of immunisations and screening.
You may wish to speak with the hospital chaplain or other spiritual leader dependent upon your faith; the DSD team can help you with this. Additional information about the role of chaplains in pastoral care for these conditions can be found here.
Receiving a new diagnosis – for the young person
Some adolescent patients come to the clinic for the first time when they find that puberty is not progressing as expected. They may have concerns about their genitalia looking different, or about their breast development. Often blood tests and ultrasound scans will be undertaken. It is important that the young person understands what these are for. The young person, and you as parents, may find that new information causes concern, since it may mean that you and your daughter question some taken for granted assumptions, for example, about having periods and being able to carry a pregnancy. Vaginal dilatation may be talked about in clinic for young women with vaginal atresia or prior to any vaginal surgery. Having to use vaginal dilators can cause young women concern; the nurse and psychologist are there to help support you to understand what this involves, the likely outcome, and your role in managing this aspect of your care, including talking about when you may want to start doing this.
Creating a clinic has laid the foundation for research that will improve the quality of care, and the quality of life, of patients with DSD. A project within Alder Hey is currently looking at transition services, and DSD will be explored within the contexts of the findings from this study. Long-term follow up may allow for longer term research, and help us in the future to understand the lifelong impact of DSD. We also plan a study looking at the DSD clinic, how we can ensure this could best meet your needs and those of your child or young person. We are also working with other centres to explore how best we could train our doctors and nurses of the future about this sensitive area. Young people have also recently participated in a study to explain how they view their interactions and involvement with healthcare professionals, and links to the findings will be updated as soon as the research is complete.
We welcome feedback about this site, as we work towards its ongoing development. Currently, we have asked an advisory group of young people with DSD who have experience of Alder Hey to be part of our ongoing review of this information.
MRKH is a congenital condition that affects the female reproductive system
Turner’s syndrome (TS) is a chromosome abnormality affecting only females, caused by the complete or partial deletion of the X chromosome. The incidence of TS is approximately 1:2000 live female births.
DSD families: information for parents, professionals and young people.
dsdfamilies is an on-line information and support resource for parents of DSD children and for DSD teens and young adults. The website provides a service: it brings together user-friendly information on the medical management and decision-making in DSD, with psychological support, and sensitive and practical peer support.
This site is educational, and aims to combine the best features and articles of the old Bodies Like Ours website with and new updated articles and reference materials. It provides valuable information to people seeking intersex information and peer support.
AIC is an American organisation that uses legal strategies to advocate for the civil rights of children born with DSD.
Anorchia is the congenital absence of the testes and is a very rare condition, which for some centres may be managed by the DSD team. Your son will see the endocrinologist, the urologist at some time to discuss prosthesis and you or your son may wish to develop links with the psychology / nursing team for support about sharing information as your son develops and matures.