Congenital Adrenal Hyperplasia Resources
Caring for a child with any illness or injury can be overwhelming. To help you find answers to your questions and feel confident with the care you’re providing your child, we’ve created the following list of health resources. We hope they can help make this time in your family’s life a bit easier.
Patient Family Education
Solu-Cortef Emergency Injection
This video provides step-by-step instructions on how to administer Solu-Cortef emergency injection (hydrocortisone injection), also called a "stress dose," during an emergency. The video is also available in Spanish and Arabic.
Books
Congenital Adrenal Hyperplasia: A Parents’ Guide
http://www.amazon.com/CONGENITAL-ADRENAL-HYPERPLASIA-Parents-Guide/dp/1420806491
Congenital Adrenal Hyperplasia: A Parents’ Guide is a comprehensive guide for parents of children with CAH, written in plain English by an endocrinologist and a mother of a child with CAH.
Educational Materials
Intramuscular (IM) Injections [PDF]
Find information on how to prepare and administer intramuscular injections (medicine injected into a muscle), what supplies you need, and helpful tips on how to prepare your child for an IM injection.
Websites
CARES Foundation
http://www.caresfoundation.org
The CARES Foundation improves the lives of people affected by CAH around the world.
I Am Late Onset CAH Campaign
https://iamlateonsetcah.wixsite.com/lateonset
This campaign is designed to bring light to the complications in finding diagnosis for women with Late Onset CAH, to better educate doctors on symptoms, to better educate women on the inter-workings of their body, and to engender a sense of community.
National Adrenal Diseases Foundation
http://www.nadf.us/
The National Adrenal Diseases Foundation informs, educates, and supports those with adrenal disease and their families to improve their quality of life.