- CASE FILE
Rare Syndrome: ROHHAD which stands for Rapid-onset Obesity with Hypothalamic Dysfunction, Hypoventilation and Autonomic Dysregulation.
ABOUT THIS CASE FILE
In June of 2010 at the age of 4 years old my daughter was diagnosed with ROHHAD. ROHHAD stands for Rapid-onset Obesity with Hypothalamic Dysfunction, Hypoventilation and Autonomic Dysregulation. ROHHAD is an extremely rare disease. There is no treatment or cure for ROHHAD and the source of this disease has not yet been determined. Symptoms of ROHHAD vary for each child and are usually misdiagnosed. They generally start with rapid onset obesity in the first 2-4 years of life then lead to impairment of the nervous system and inevitably reduced lung function leaving most ROHHAD patients unable to breathe without the assistance of a ventilator. My daughter is now 13 and has been on a ventilator since age 5.