Ondine's Curse/CCHS Info

Information on Ondine's Curse
Congenital Central Hypoventilation Syndrome

In the fall of 2010, I was studying for my Internal Medicine board recertification. Ondine's curse, or CCHS, came up in my studies and the idea of this affliction wouldn't leave me. 

I imagined a teenage girl who suffered from this syndrome, one that would face impossible odds, love and loss, and a unearth secrets about herself and her loved ones. I imagined a girl with a possibly fatal flaw who would somehow find how strong she truly could be.

And so my book, CONTROL, was born. My protagonist, Zelia, is completely fictional and some details of her Ondine's Curse are fictionalized. However, there are real people who suffer from and survive with CCHS. If you would like to learn more about this very real syndrome, are looking for support for yourself or your family member, or would like to help with CCHS outreach to families, here are some links with information.

Center for Autonomic Medicine in Pediatrics, Children's Hospital of Chicago
CCHS Family Network:
Donate to support education and outreach; find physicians, community support, and detailed information about CCHS

NIH's Genetics Home Reference on CCHS

Medscape Reference on CCHS 

The Myth of Ondine