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Your Child Resources and Links

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elanaandjackieElana Mendelowitz and Jackie Rau, two interns for Accord Alliance, compiled a list of useful links for DSD families found on the University of Michigan's YourChild  webpage.

YourChild: Development and Behavior Resources is a tool developed by the Division of Child Behavioral Health in the Department of Pediatrics (hosted by the University of Michigan Health System) to provide timely and authoritative information, links to websites, and podcasts for families with questions about child development, both typical and in the case when it is challenged by a medical condition. There are specific sections pertaining to families with a child affected by a disorder of sex development. Below are links to and descriptions of the YourChild pages related to Disorders of Sex Development (DSD).

 

Disorders of Sex Development (DSD) Resources

http://www.med.umich.edu/yourchild/topics/dsd.htm

DSD are defined as conditions, present at birth, in which the sex chromosomes, gonads, or sex anatomy is atypical. This page provides general information, including a list of the specific conditions that fall under the general category of DSD, facts about the stages of physical sex development and links to both advocacy and support groups focused on DSD. This page also provides links to the Handbook for Parents (published by Accord Alliance); a unique resource that provides comprehensive information about DSD, from the family perspective.

Congenital Adrenal Hyperplasia (CAH)

http://www.med.umich.edu/yourchild/topics/cah.htm

CAH is a serious medical condition that is identified at birth through the newborn screening program. The condition affects boys and girls in the same proportion but has the unique effect in girls of causing the female genitals to have an atypical appearance. This page provides a description of the disorder, its causes, the different types of CAH, effects on both physical and psychological development, and much more.

Disorders of Sex Development (DSD) Podcast (Two Parts)

http://www.med.umich.edu/podcast/YourChild.xml *

This podcast features Dr. David Sandberg, a pediatric psychologist with expertise on DSD. Dr. Sandberg sheds light on the biology of DSD and describes how providers working with patients and families help to deliver the best possible outcomes. He explains common misconceptions about DSD. Part 2 of the podcast looks specifically at some confusing terms and definitions involved with DSD including how “transgender” or “transsexualism” differs from DSD.

*This link takes you to a page of all the podcasts on the YourChild site; scroll down for Disorders of Sex Development podcasts (part 1 and 2).

Precocious Puberty (Early Puberty)

http://www.med.umich.edu/yourchild/topics/puberty.htm

This page includes a description of development and some of the possible causes of early puberty. It also contains information about the possible implications of precocious puberty and its treatment.

Early Puberty Podcast
http://www.med.umich.edu/podcast/YourChild.xml*

This podcast features pediatric psychologist, Dr. David Sandberg.  Dr. Sandberg describes the biology of puberty, associated physical changes, and how the process differs between boys and girls. He also details precocious (very early) puberty and the difference between adolescence and puberty.

*This link takes you to a page of all the podcasts on the YourChild site; scroll down for the podcast labeled “Early Puberty.”

 

Late Puberty Podcast

http://www.med.umich.edu/podcast/YourChild.xml*

Dr. Sandberg continues his previous discussion on puberty in this podcast. He focuses on delayed puberty and how parents can assist children going through early or late puberty. He provides a definition of delayed puberty and characteristics associated with it. He details underlying causes and conditions associated with delayed puberty and also discusses potential psychological effects.

*This link takes you to a page of all the podcasts on the YourChild site; scroll down for the podcast labeled “Delayed Puberty”

Quality Care Indicators

View a summary of indicators of high-quality interdisciplinary care for children with disorders of sex development (DSD).

Click to view.

Review Expert Presentations

Pediatric Academic Societies Mini-Course on DSD Disclosure, University of Michigan DSD Research and Quality Improvement Symposium, and more.

Click to review.

Questions Answered

Find clear answers to common questions about disorders of sex development (DSD) at Accord Alliance's Frequently Asked Questions page.

Click to access.

Clinical Pearls

At the Accord Alliance blog, specialists on dedicated DSD teams share their experiences with team-building, reimbursement issues, and more.

Click to read the blog.

Meetings Upcoming

Find dates and informational links for conferences on disorders of sex development (DSD), including meetings of clinicians and support groups.

Click to view.