The MAGIC Foundation India, affiliated to The MAGIC Foundation, USA, was set up to spread the awareness of various children’s growth disorders, across India. This website is intended to provide general educational information and to help users more easily access information about children’s growth disorders.
We understand how challenging it can be for parents of CAH children, who need to manage so many things from routine blood work, dose adjustments, effects of dose changes on their kids, times of illness, times of stress, adrenal crisis, hospital stays, sleep affected by dosing and so much more. So, we want to contribute as much help as we can possibly, in every way.
We have created an Emergency Awareness Handout Pack that includes a handout for Schools and a bonus handout for parents. The School Handout contains the Emergency Handout and all you need to do is fill out the details of your child, and give it to the school. The bonus Parents Handout is to help you prepare for school, offering you suggestions on how to approach a school, how to educate teachers and how to keep this discussion ongoing in order to keep your child safe. We hope this makes a difference to your life, and we will offer you many more along the way.
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.
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.
Congenital Adrenal Hyperplasia
Congenital Adrenal Hyperplasia 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. For a child to be born with any form of CAH, both parents must carry a gene for the disorder.
Growth Hormone Deficiency
Growth hormone (GH) is a protein made by the pituitary gland and released into the blood in brief pulses. The major way that GH promotes growth is by increasing levels of the hormone, insulin-like growth factor-1 (IGF-1), and its carrier protein, IGF binding protein-3 (IGFBP-3), in the blood.
Optic Nerve Hypoplasia
A child with the Syndrome of Optic Nerve Hypoplasia, also known as Septo Optic Dysplasia or DeMorsiers Syndrome, has under-developed optic nerves. The optic nerves carry messages from the eye to the brain. ONH is the single leading cause of blindness in infants and toddlers.
Russell Silver Syndrome
Russell-Silver syndrome (or Silver-Russell syndrome) is a rare genetic disorder characterized by delayed growth in-utero (IUGR) that spares head growth (meaning the newborn has a head size that is large for his body) and ongoing postnatal growth failure.
Small for Gestational Age
SGA (small for gestational age) generally describes any infant whose birth weight and/or birth length was less than the 3rd percentile, adjusted for prematurity (gestational age). Between 3% and 10% of live births each year are diagnosed as SGA.
Turner Syndrome
Turner’s Syndrome occurs in 1 in 2,500 live female births. Approximately 98% of pregnancies with Turner’s Syndrome abort spontaneously and approximately 10% of fetuses from pregnancies that have spontaneously aborted have Turner’s Syndrome.
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.
➤ 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
[email protected]://www.https://www.https://www.https://www.magicfoundation-india.org and let us know why you are interested in joining this group.