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.

What you are doing is incredibly impressive and important"
Dr. Scott Rivkees, M.D.

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. As parents of CAH children, we also know how expensive it is to raise a child with CAH. From the cost of routine blood work and steroids lifelong, to frequent hospital admissions for infections, diarrhoea, vomiting, viral, seizures, surgeries, trauma or accidents, it is a challenge for many parents. Insurance companies in India have possibly never provided coverage to a child with CAH. Together, we can work to change these things in the future. To think that if a CAH child were born to parents who could not afford any of this, even if they were able to diagnose it, is frightening and sad. We hope at some point in the future, to use this Support Community to change this, and to work towards having every child born with CAH live. This is how CAH Support India began.

At CAH Support India, we hope to improve the lives of the Congenital Adrenal Hyperplasia community in India through easily available information on CAH relevant to India available to parents, especially new ones who are lost in a helpless sea of ignorance. We hope to support each other through difficult phases in the lives of our CAH children so that we don’t feel alone. We reach out to all parents of CAH children to come together and make a difference in India, as CAH is still under served, under supported and not funded. We aim to improve the awareness and knowledge of CAH even within the healthcare community, as there are regular Paediatricians even today, who do not know enough about CAH. Because the disorder is so rare, there are some medical professionals, especially Paediatric Assistants in some clinics, who are still not familiar with the general description of CAH. Specialists in India, Paediatric Endocrinologists are so few, that in many places of India, affected families struggle for regular access to one. Due to that, many children of CAH, struggle through childhood, mismanaged and improperly treated, leading to many problems. Our Vision for CAH India is to work together and change the way CAH is looked at, handled and approached.

We hope and pray that in the future, CAH Support India will change the way CAH is known in India.

CAH Support India: In The News

The Hindu,
June 14th, 2017


When a 15-day-old baby, who had a bout of mild diarrhoea and vomiting became severely dehydrated, the parents, though worried, did not sense something could be seriously wrong. However, they were shocked when their doctor diagnosed the baby with Congenital Adrenal Hyperplasia (CAH).


CAH is an inherited disorder that affects the adrenal glands where the glands cannot produce cortisol and aldosterone, and instead produce an unwanted excess amount of androgens.

CAH Support India: Child’s rare genetic disorder prompts parents to launch support group
CAH Support India: Deepa Kannan on being a mum to a child with rare health condition

Mums And Stories, April 24th, 2017


Here’s an incredible story of a mum who has perhaps been subjected to numerous judgements, opinions on her choices and decisions taken in life. It has surely not made her weak but every step has made her amazingly strong. Deepa Kannan of Yogasopanam wellness is a yoga teacher-entrepreneur and a mum to a child who has a very rare health condition. Deepa is someone who is married for the second time and with Mums and Stories she shares her dreams, her life and on parenting her child- Omkar.

I Am CAH


Cares Foundation is a Not for profit organisation in New Jersey which was set up for the reserach, education and support of Congenital Adrenal Hyperplasia. They have declared June as CAH awareness month and to increase the awareness of CAH, each day the Cares Foundation writes stories about someone who has the condition or who is working towards it. On June 24th, 2016, the Cares Foundation has written about Omkar. All the information shared by Omkar is to say that although he has CAH, he is so much more. There is a video as well. 

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.

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Copyright CAH Support India, 2017