Congenital Adrenal Hyperplasia (CAH)

Intersex in the Age of Ethics (Ethics in Clinical Medicine Series) by Alice Domurat Dreger (Editor)

"The range of ethical issues that arise in regard to the treatment of intersex infants, children, and adults is richly representative of clinical healthcare ethics generally. By incorporating the perspective of patients and their stories in this account, however, Intersex in the Age of Ethics does more than introduce the question of healthcare ethics in microcosm. It also leads the reader to examine the effect of ethical reflection on the lives of patients. Unlike many collections of essays, this one hangs together very well both for reading and teaching. Intersex in the Age of Ethics is a model, in both senses of the word, of what thoughtful healthcare ethis a reflection can accomplish. It embodies a conceptual model of ethical reflection that leads the reader to pose the right questions and to respond to them with patients' lives in mind. And it is a model in the evaluative sense--excellent, admirable, and deserving of imitation." David T. Ozar, PhD, Loyola University of Chicago

"At last! Here is the volume that clinicians, teachers, counselors, parents, feminists, and philosophers have needed to understand intersexuality." -- Cheryl Chase, founder, Intersex Society of North America, Book Cover

CAH Personal Stories

This is a message board for people with congenital adrenal hyperplasia.  Here CAH survivors, parents, spouses, doctors and friends can share the stories of their lives with the world. 

People with CAH have a wealth of thoughts and feelings to share, and maybe through this sharing, everyone can learn more about this medical condition, how it has been treated medically and surgically, and how certain surgeries must be stopped!  The medical community and society at large must be made aware that the female genital mutilation which has been considered a necessary medical treatment for CAH, is not needed for the survival of the child, particularly the female child.   Boys born with CAH are not castrated, but the little girls are!   This needs to change before more girls are medically raped, and physically and emotionally scarred for the rest of their lives.  

This board is for sharing with the world triumphs and tribulations, loves and losses, successes and dreams!  By sharing the stories of our lives, we can improve the medical treatment of children born with CAH, make a positive influence in their lives, and maybe make ourselves feel good inside for standing up and making our voices heard.

(Edited from the introduction to the board by "Mike")

Other Web Boards:

Congenital Adrenal Hyperplasia Due to 21-Hydroxylase Deficiency

A guide for patients and their families

This website has extensive resources.  Comments and Suggestions provided by: John P. Gearhart, M.D. and Carol Saucier, R.N., M.S.N.

Site includes:

Late Onset Congenital Adrenal Hyperplasia

The information on, or linked from this site is intended for informational purposes only.  This site offers:

New  Developments in the Treatment and Diagnosis of Congenital Adrenal Hyperplasia

Article by Phyllis W.  Speiser, MD, Chief, Division of Pediatric Endrocrinology, North Shore University Hospital, Associate Professor of Pediatrics, New York University School of Medicine

Excerpt:

What is CHP?

Congenital adrenal hyperplasia (CAH), also termed adrenogenital syndrome in older literature, is a common inherited form of adrenal insufficiency. This group of diseases is due to mutations (genetic defects) in the genes coding for several enzymes needed for the production of adrenal cortex hormones. About 95% of cases of CAH are caused by 21-hydroxylase deficiency. This enzyme is necessary for efficient production of two vital adrenal steroid hormones: cortisol and aldosterone. Deficient production of these substances causes disruption in the delicate balance of hormones. Sensing low levels of cortisol, the adrenal, directed by the master hypothalamus and pituitary glands, goes into high gear. Because cortisol production is impeded, the adrenal cortex instead manufactures androgens, or male steroid hormones, an undesired by-product. In short, while one part of the adrenal functions poorly, making inadequate amounts of cortisol and aldosterone, another portion of the gland over-produces androgens. This last feature distinguishes CAH-21-hydroxylase deficiency from Addison’s disease, since in Addisonian patients, the adrenals are most often completely non-functional.

Online Mendelian Inheritance in Man (OMIM)  

Site Includes: