CAH Support India / Foreword

CAH Support India is an organisation that was set up to spread the awareness of Congenital Adrenal Hyperplasia in all its forms, across India. The CAH Support India website is intended to provide general educational information and to help users more easily access information about CAH (Congenital Adrenal Hyperplasia).

Foreword

Families of India,

My name is Jamie Harvey. I am International Director and Co-founder of an organization called The MAGIC Foundation, USA which developed many years ago. It is my privilege to congratulate you for establishing CAH Support India. I know from experience that this organization will greatly help you and your child, in ways that you cannot yet imagine.

As parents, our children are our world, our purpose and our hearts. To learn that our child has a rare long term medical issue is shocking and heartbreaking. It has been a long time since my children were first diagnosed, (I am now a grandparent). However, those first years were so traumatic that I remember them as if they were yesterday. I truly understand your fears, anger, confusion and grief.

I remember when my first child was diagnosed, I panicked. I began to study everything I could learn about the condition. I was starving for information. And despite my hesitancy, I began to communicate with other parents and share experiences. These "conversations" turned out to be much more important than I would realize until years later.

Talking helped us with the obvious...

a) Learn from other parents experiences so that we could make the best medical and school decisions.

But talking also helped with the less obvious....

b) As the old saying goes: Actions speak louder than words. This saying, is very true. Not only did those early conversations lead me to a path of developing a group like yours in the USA called The MAGIC Foundation, but they also showed to my children that they were important! I was not embarrassed of them. They were the strongest of us all and I was proud of them. This behavior gave them a confidence they would rely upon for their lifetime. They “felt” important and special rather than weird and broken. Now to be honest, we did not go around to everyone talking about these issues, it was primarily family, our organization activity meetings or the doctors office. But when conversations did develop they sensed my no hesitation pride, and they in turn "felt" good about themselves despite the challenges.

The children formed friendships with children who had similar medical issues at MAGIC Foundation social gatherings. Parents met other parents and learned that they could talk safely about sensitive topics. Once a year we would invite a doctor to come talk about certain topics while the children played. These activities were the one time of the year when our kids could proudly talk about shots, being mad about their situation or the latest video games! There was no pressure, they just knew that the other children were “just like me” and they felt good!

To know logically that we are not alone (parents and children alike) because of medical circumstances is quite valuable. Yet, to "feel" a part of something important because you are "special" is more healing than I can explain with words. Imagine 8-year-old children who know their "just like me" friend is going to be at a gathering, and to be so excited…that they run to greet each other with a hug! I have seen this many MANY times! And as an old person, I know and have seen that those friendships last for a lifetime!

As MAGIC was once in the early stages as CAH Support India is today, it is exciting to see the opportunities in front of you for the families of India. CAH Support India will help build emotional health and happiness for you, your child and your family. The knowledge and experiences you share with each other will help guide you in those important medical decisions throughout the years.

I encourage everyone to please support Deepa Kannan & Shyam Nair in their efforts to build this organization. It is a selfless task which will reward your child and family forever. Whatever assistance you can offer would be fantastic and sincerely appreciated. CAH Support India will not succeed if people do not get involved. Stubborn, determined parents like me and Deepa & Shyam are quite welcome!

I wish you all the best of success with this group and look forward to seeing pictures of the smiling children’s faces at an event.

Warm Regards,

Jamie Harvey
Co-founder, The MAGIC Foundation
CEO, ICOSEP
(International Coalition of Organizations
Supporting Endocrine Patients)

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