Congenital Adrenal Hyperplasia (CAH)
Finding Support & Resources
Where can I find more information and support related to CAH?
On the Web:
From the Michigan Department of Community Health.
An overview of Sex Development and the biology of CAH, with flash animation and great visuals to aid understanding.
Information about CAH, treatment, surgery, advocacy, and support groups for those affected and their families.
Information about CAH. Message boards to support those affected and their families.
A national non-profit that provides support services for the families of children affected with a wide variety of chronic and/or critical disorders, syndromes and diseases that affect a child’s growth. The foundation also provides support services for adults affected by these disorders.
From the Texas Department of State Health Services. Also available in Spanish:
An organization that connects parents of children with chronic health conditions to one another, providing the opportunity for parents to share experiences and support one another.
This segment about parenting children with atypical genitals aired October 26, 2009.
- Accord Alliance (for caregivers of girls with CAH)
Information about Disorders of Sex Development (DSD). Committed to improving care and outcomes for individuals with DSD. The Handbook for Parents is a valuable resource that can be found on this website.
General information about CAH.
This link has files that you can download and print to create a Care Notebook—a tool to organize information about your child’s medical care and condition.
A tutorial with audio and pictures to explain all about newborn screening. From MedlinePlus, a service of the National Library of Medicine and the National Institutes of Health.
Related pages on YourChild:
- Disorders of Sex Development (DSD) (for caregivers of girls with CAH)
- Children with Chronic Conditions
- Early Puberty
- Developmental Delay
- Siblings of Children with Special Needs
Related YourChild podcasts:
- Disorders of Sex Development Podcast Part 1 (for caregivers of girls with CAH)
- Disorders of Sex Development Podcast Part 2 (for caregivers of girls with CAH)
- Early Puberty Podcast
- Growing Up Short in a Tall World Podcast
- Siblings of Children with Special Needs Podcast
- Handbook for Parents (for caregivers of girls with CAH) made available through Accord Alliance. You can also get the book in pdf or request a print copy.
- Surgically Shaping Children: Technology, Ethics, and the Pursuit of Normality edited by Erik Parens. Find out more about the book. Part IV, “Children and Parents Deciding about Appearance-Normalizing Surgery,” may be of special interest. This section includes chapters on “parents’ experience of atypical genitalia,” and “what to expect when you have the child you weren’t expecting.”
Written and compiled by Kyla Boyse, RN and Talyah Sands. Reviewed by David E. Sandberg, Ph.D.