An information and support resource for families with children, teens and young adults who have a DSD
When your baby is born with genitals that look different… [PDF]
Co-written by dsdfamilies and specialists in this field, this brochure provides some first insights into DSD and DSD terminology. It also offers friendly, accessible and can-do advice for managing social circumstances so families can concentrate on caring for their little one.
For an English version, please click on the above link.
We are grateful for the endorsement of the brochure by:
-The British Society for Paediatric Endocrinology and Diabetes
(including the BSPED DSD Special Interest Group)
dsdLife (an EU-funded research project) is supporting the translation of the booklet in a number of languages including: German, French, Polish, Dutch, Swedish, Arab, Turkish and Urdu. We will post these here as soon as translations have been finalised. A Russian translation is nearly ready to go.
- Much more than a brochure, indeed a whole book, is the DSDGuidelines - Handbook for Parents. This book was written by a group of clinicians, affected adults and families. The Guidelines offer a lot of practical advice on accepting the diagnosis, on talking with your child and sharing information about his/her condition as he/she grows, and on talking with others about the diagnosis. A must read for all new parents (and for those of us who have been a bit longer on this journey too!). Please visit the website of your national support group as some have translated the DSDGuidelines.
- This patient factsheet has been produced following the publication in September 2011 of the (UK) Society for Endocrinology’s guidance document on the initial evaluation of a child with a suspected disorder of sex development.
- The American AIS/DSD Support Group for women and families published in October 2011 a new brochure created to provide patients and families with information and support at the time of diagnosis. You find it here.
- Advocates for Informed Choice (AIC) is 'an American organisation that promotes the civil rights of children with intersex conditions or DSDs (differences of sex development)'. A useful brochure for parents is 'Know your Rights'
- The US Hormone Foundation produced a fact sheet on 'Ambiguous Genitalia'