Shyam and Deepa are renowned Yoga teachers in Bangalore and living an idyllic life on a farm amidst the elephant corridor.
Their son, Omkar, was born on December 2nd 2009 at Manipal Hospital Bangalore.
He fell seriously ill when he was just three weeks old and they soon discovered that he had an Adrenal Disorder - Congenital Adrenal Hyperplasia, also known as CAH and that he would be steroid-dependent for life.
They were shattered and the word steroid brought in panic and fears of side effects. They were also told that every episode of crisis like vomiting, diarrhea, high fevers, and infections could be potentially dangerous and even fatal and that all these would involve a hospital stay with IV and double dose of steroids as he would never be able to cope with stress, physical or emotional.
They went through every emotion from denial to anger to helplessness and panic attacks. Emerging from these emotions was the thought that there must be some purpose to why Omkar was born this way. They educated themselves on CAH and soon realized that there was no proper support group in India for parents whose children have CAH. Deepa and Shyam are blessed to have a wonderful paediatric endocrinologist who guided them at every step - Dr. Shaila Bhattacharyya. They started CAH Support India – a group on Facebook dedicated to providing as much information as possible on CAH. Deepa setup a Facebook page, a blog that is dedicated to Omkar’s Journey with Congenital Adrenal Hyperplasia – a very touching and personal account of how difficult it is for a parent to deal with different situations in the life of a CAH child.
Their goal is to provide knowledge and support to all parents with CAH children, grow in knowledge and build a community that can increase awareness of CAH in and around Bangalore and India.
Their thought for parents of CAH children and for the future of CAH Support India - ”For any parent with a newly diagnosed child of a rare condition, allow yourself to go through the emotions that you feel, start to look around and educate yourself. You can also find support groups and manage it like you would manage anything else without becoming bogged down by emotions. We need to educate schools, see that there are emergency medication pouches available at different locations, stick to correct meal times even at school based on medication times. Simultaneously it is a continual process to educate our children about what is good and what is not in something like sports, travel carefully, predict many things and take necessary precautions. It really means to be one step ahead all the time. Our take is that as parents with a child who has a rare condition, avoid guilt or frustration. Look at it philosophically and educate yourself for empowerment. For CAH Support India, we envision a group with dedicated and supportive parents, much like the parents group that the Magic Foundation has in US. Some of the parents in our group are also part of that. But what we envision for this group, here in India, which of course is still in its very nascent form, is one where parents support and share whatever they need to, both from India relevant medical facts, information about India relevant doctors, bringing forward new information about CAH from all over the world but applicable to India, sharing tools that help and improve the health of CAH children so they can avoid multiple crisis, improving and increasing the mandatory test for CAH in hospitals all over India and those that go beyond the renowned large scale ones, and create a massive impact in terms of a nationwide India centric support structure for Congenital Adrenal Hyperplasia. This is our vision, and in order to make this happen, we encourage support from anyone who is in a position to or who would like to make a difference in CAH awareness. To begin with, we ask that parents of CAH children feel that openness to reach out to us, even if they are part of any support group worldwide. Together, we can make that difference. Let this be about building a platform for India.”
MD, DM (PGIMR, ENDO) MRCP, DCH (UK)
Professor and H O D - Dept of Paediatrics
Paediatric and Adolescent Endocrinologist,
Manipal Hospital, Bangalore
Convenor for Paediatric Endocrinology Fellowship
Visiting Professor – Bapuji Child Health Institute
Author of endocrine chapter
IAP text Book of Endocrinology
IAP – Drug Formulary
A-Z in Endocrinology
Dr. Shaila S Bhattacharyya is a leading Paediatric Endocrinologist, with more than 8 years experience in her profession. She works as a consultant in Manipal Hospital and is also available at Shivajyoti Clinic, Indiranagar.
She completed MD in Paediatrics from Davanagere College and DM (Endocrinology) from the famous PGI College, Chandigarh. Dr. Shaila got her MRCP and DCH in UK and practiced Paediatrics, Neonatology. She has proved her excellence in Academic knowledge and clinical experience while working as a medical doctor in the department of Paediatric Endocrinology at the prestigious Manchester Children’s hospital.
She specializes in treating growth disorders in children, early as well late puberty, childhood and adolescent Diabetes and malfunctions of thyroid gland.
“As Omkar's grandmother, may I say that I had never heard of CAH till he was diagnosed, barely a month after he was born.I felt that I had to know more, and read all I could find about CAH from websites like Magic Foundation, Cares Foundation, Web MD....was intrigued as to why there was nothing in India. Fast forward 7 years and still very little about CAH in India, but hopefully there will be a change with this website.
Acceptance, not denial, blame, guilt should be what family should do. Regular blood tests and dosage of steroids life long is basic to CAH and I am sure Deepa and Shyam will agree with me that , for example, in case they are occasionally not around, they can trust these grandparents to make sure breakfast is on time so that the right dose of medicines can be taken. This is the kind of support that I would like all CAH kids to have from not only grandparents but all the family!”
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.
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.
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.
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.
Mobirise themes are based on Bootstrap 3 and Bootstrap 4
Publish your website to a local drive, FTP or host on Amazon S3, Github.
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: