CAH Support India: Overview

CAH Support India is an organisation that was set up to spread the awareness of Congenital Adrenal Hyperplasia in all its forms, across India. It is a community of parents, grandparents and caregivers of CAH children that support each other, a space for Paediatricians and Paediatric Endocrinologists to share knowledge of CAH, old and new, with each other.

Our mission is to spread the awareness of the condition called Congenital Adrenal Hyperplasia, which is so rare and so unknown, even in educated circles. It is our way to support parents of CAH children who go through so many challenges in bringing up a child with CAH, even something as simple as admission to schools, which many parents take for granted with normal children.

Our aim is to support parents and help them to change the mind-set of schools in India, as many of them, refuse a child with CAH admission, or for that matter, probably any child with a genetic disorder. We hope to play a role in changing this kind of unfair discrimination towards a child, for no fault of theirs.

Congenital Adrenal Hyperplasia

CAH is an inherited disorder that affects the Adrenal glands, wherein the Adrenal glands cannot produce Cortisol and Aldosterone, and instead produces an unwanted excess amount of Androgens.

CAH is an autosomal recessive genetic disorder, which means that it affects males and females in equal numbers, and that it requires both parents to pass on a gene in order for it to manifest as a disease.

About 1 in 10,000 to 18,000 children are born with CAH.

The most common cause of CAH, accounting for 95% of all cases, is 21-hydroxylase deficiency (21HD).

Congenital Adrenal Hyperplasia - Features

Diagnosis

1-hydroxylase deficiency Congenital Adrenal Hyperplasia is usually diagnosed by elevated levels of 17-Hydroxyprogesterone, with or without low Cortisol levels in a patient’s blood sample.

Symptoms

The primary issue in Congenital Adrenal Hyperplasia is the inability of the adrenal glands to create enough cortisol in all clinical forms of CAH and in addition, inability to make enough aldosterone in the salt-wasting form.

Glucocorticoid Treatment

This treatment is given for anyone with CAH, irrespective of whether they are salt wasting or not. It has to be sufficient to replace the deficient or missing Cortisol, and at the same time, it has to prevent the Adrenal glands from over producing Androgens.
.

Mineralocorticoid Treatment

In the case of someone with salt wasting CAH, in addition to the Glucocorticoids, they also require a Mineralocorticoid or Flurocortisone, to replace the deficient Aldosterone which is required to regulate salt and fluid levels and to maintain normal blood circulation. 

CAH Support India - Resources

CAH Support India: Emergency Awareness Handout Pack

We understand how challenging it can be for parents of CAH children, who need to manage so many things.

In the first of a series of handouts for parents, we have created an Emergency Awareness Handout Pack that includes a handout for Schools and a bonus handout for parents.

DOWNLOAD

Congenital Adrenal Hyperplasia: A Parents' Guide

by C. Y. Hsu and Scott A. Rivkees MD

CAH is an inherited disorder of the adrenal glands. Its effects can be wide-ranging and serious-from problems of ambiguous genitalia in baby girls; to problems with growth and physical development; to problems with infertility and hormone imbalance.

MORE INFO

Congenital Adrenal Hyperplasia: A Comprehensive Guide

by Peter C Hindmarsh and Kathy Geertsma

Congenital Adrenal Hyperplasia: A Comprehensive Guide addresses how hydrocortisone works, what can go wrong, and how to correct it, also explaining why the timing of doses and measurement of cortisol from a dose is extremely important.

MORE INFO

Connect with us!

We have created a Facebook page called Omkar's Journey with Congenital Adrenal Hyperplasia to chronicle all possible events and scenarios in the life of a child with CAH, with a view to let new parents know what to expect.

CLICK HERE

CAH Support India: Omkar's Journey with CAH

CAH Support India on Facebook

The Congenital Adrenal Hyperplasia Support India group on Facebook is a closed group and is for discussion and sharing of information relevant to Congenital Adrenal Hyperplasia only. This is a safe place for parents whose children have CAH to exchange and seek information that might help them deal with the problem. Note that posts which are not relevant to CAH and which are advertisements for sales of products, services or groups will be deleted and the person posting the message will be removed from the group without notice. If you wish to join this group:

Step 1: Search for the group page on Facebook.
(https://www.facebook.com/groups/433557750183212/

Step 2: Please request to join.

Step 3: Send a message to the Admin or an email to cahindiasupprt@gmail.com and let us know why you are interested in joining this group.

Share this page!

Copyright CAH Support India, 2017