Information management

If you have been told that your child may have a DSD you will face many questions. Some relate to the information you are receiving from healthcare professionals and other sources. Doctors might not always realize that you do not understand all information that is given to you. Never be afraid to ask for more information, if you are still struggling with unanswered questions. Caring for a child with a DSD and understanding their condition is complex, and even good explanations are not always easy to comprehend.

Other important issues concern the information on the condition you give to your child. You may wonder when you should share information, what kind you should give, who should do it and what words you should use. As parents you may feel insecure about such matters. You may want to ask the team that treats your child where you can get guidance and support, whether within the team or elsewhere. Internet information is increasingly available, such as this example booklet written by  a mother.

What the child should know very much depends on his or her condition and at what age the diagnosis is made.  When children are very young they may need explanations for why they visit doctors, why they need to use medication and why they might look different from other children. Somewhat later, when they approach puberty, they may need information about why they have to use hormones. With  time, various aspects of their condition may be explained, including information about reduced or absent fertility. When they approach adulthood the team should have given them complete information about their DSD. As an adult, they should never unexpectedly be confronted with unknown aspects of their DSD.

As a parent you may also wonder what others should know about your child’s condition. However, there is not one single correct answer to this. With help, you may find a balance between openness (about certain aspects) in your child, and keeping information on your child’s condition private