Living with Rapid-onset childhood obesity-hypothalamic dysfunction-hypoventilation-autonomic dysregulation syndrome
A rare childhood syndrome with fast weight gain followed by hormone, breathing, and automatic nervous system problems.
Understanding Rapid-onset childhood obesity-hypothalamic dysfunction-hypoventilation-autonomic dysregulation syndrome
The key features are dramatic weight gain over 6 to 12 months in the first 10 years of life, followed by hypothalamic dysfunction, autonomic nervous system problems, and slow, shallow breathing (alveolar hypoventilation). Children appear to have normal growth, development, and health before symptoms begin.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Rapid weight gain in childhood
- Hormone problems from the hypothalamus
- Slow, shallow breathing (hypoventilation)
- Autonomic nervous system problems
- Reduced sweating and tears
- Behavior changes
Not everyone has every symptom. GARD's list comes from the Human Phenotype Ontology.
Diagnosis
- 1Talk with your doctor
Share the symptoms you've noticed, when they started and your family health history. Notes and photos can help.
- 2See a specialist
Specialists who may be involved include genetic specialists, hormone specialists and lung and breathing specialists.
- 3Ask which tests can help
Your care team will decide which exams and tests can confirm the diagnosis.
- 4Connect with expert centers
Dysautonomia International may keep lists of experts for this condition.
Care & treatment
- Care team
- Genetic specialists (geneticists); Hormone specialists (endocrinologists); Lung and breathing specialists (pulmonologists)
- Expert care
- Expert lists: Dysautonomia International
- Treatment
- GARD doesn't list specific treatments for this condition. Your care team will tailor care to your symptoms.
- Research
- Clinical trials and observational studies may be options. See the research section below.
General information, not medical advice. Your care team makes the decisions.
Everyday life
Living with a rare condition is easier with support.
- Connect with Dysautonomia International and other patient organizations
- Keep notes on symptoms, changes and questions for appointments
- Ask about patient registries that help research
- Look into financial aid and travel resources for care visits
Quick facts
GARD says the cause of ROHHAD is currently unknown.
Also known as: rapid-onset childhood obesity-hypothalamic dysfunction-hypoventilation-autonomic dysregulation-neural tumors syndrome; rapid-onset childhood obesity-hypothalamic dysfunction-hypoventilation-autonomic dysregulation-neural tumours syndrome; rapid-onset childhood obesity, hypothalamic dysfunction, hypoventilation, autonomic dysregulation syndrome; rapid-onset obesity with hypothalamic dysfunction, hypoventilation, and autonomic dysregulation; rapid-onset obesity with hypothalamic dysfunction, hypoventilation, and autonomic dysregulation syndrome; rohhad
Patient organizations
- Dysautonomia InternationalRapid-onset childhood obesity-hypothalamic dysfunction-hypoventilation-autonomic dysregulation syndrome · United States
- American Cancer SocietyRapid-onset childhood obesity-hypothalamic dysfunction-hypoventilation-autonomic dysregulation syndrome · United States
- ROHHAD Fight Inc.Rapid-onset childhood obesity-hypothalamic dysfunction-hypoventilation-autonomic dysregulation syndrome · United States
You are more than your diagnosis
Perspectives from people navigating life with Rapid-onset childhood obesity-hypothalamic dysfunction-hypoventilation-autonomic dysregulation syndrome.
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