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Diseases

Genetic and Rare Diseases Information Center (GARD)

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ROHHAD


Other Names for this Disease

  • Rapid-onset obesity with hypothalamic dysfunction, hypoventilation and autonomic dysregulation
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Treatment

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How might ROHHAD be treated?

There is currently no cure for ROHHAD. Treatment varies based on the signs and symptoms present in each person and the severity of the condition. Because ROHHAD can affect many different parts of the body, children with the condition are often cared for by a team of healthcare providers who specialize in a variety of different medical fields. For example, children may be referred to nutrition services to help prevent additional weight gain. Hypothalamic dysfunction is often managed by an endocrinologist who may recommend hormone replacement therapy (such as growth hormone), a strict fluid intake regimen, and/or other measures based on the child's symptoms. Children with alveolar hypoventilation will be referred to a pulmonologist (a doctor who specializes in the diagnosis and treatment of lung conditions) and/or a respiratory therapist who can determine if and when ventilators are needed. Due to an increased risk for certain types of tumors including ganglioneuromas and ganglioneuroblastomas, affected children may also be screened periodically for these tumors. Other healthcare providers who may help with the care of a child affected by ROHHAD include cardiologists, gastroenterologists (a doctor who specializes in the diagnosis and treatment of gastrointestinal conditions), neurologists, nurses, social workers, speech and language therapists, and special education teachers.[1]

Last updated: 1/9/2014

References
  1. Rapid-onset Obesity with Hypothalamic Dysfunction, Hypoventilation, and Autonomic Dysregulation. NORD. August 2013; http://www.rarediseases.org/rare-disease-information/rare-diseases/byID/1216/viewAbstract.


Management Guidelines

  • Project OrphanAnesthesia is a project whose aim is to create peer-reviewed, readily accessible guidelines for patients with rare diseases and for the anesthesiologists caring for them. The project is a collaborative effort of the German Society of Anesthesiology and Intensive Care, Orphanet, the European Society of Pediatric Anesthesia, anesthetists and rare disease experts with the aim to contribute to patient safety.

Medical Products

The medication(s) listed in the table(s) below have been approved by the Food and Drug Administration (FDA) for treatment of this condition. The FDA Office of Orphan Products Development designates "orphan products" for those that treat rare diseases affecting fewer than 200,000 Americans. The table(s) below may not be an exhaustive list of drugs or products used to treat this condition. There may be other products available that are not considered orphan products. To search for all FDA approved drugs, visit Drugs@FDA. You can find orphan products used to treat other conditions by searching the Orphan Drug Product Designation database.


Generic Name Follitropin alfa, recombinant
Trade Name
(Manufacturer Name)
Gonal-f®
(EMD Serono, Inc.)
Indication
The FDA has approved this product to be used in this manner.
For the induction of spermatogenesis in men with primary and secondary hypogonadotropic hypogonadism in whom the cause of infertility is not due to primary testicular failure.
More Information about this product Drug Information Portal

Generic Name Gonadorelin acetate
Trade Name
(Manufacturer Name)
Lutrepulse
(Ferring Laboratories, Inc.)
Indication
The FDA has approved this product to be used in this manner.
For induction of ovulation in women with hypothalamic amenorrhea due to a deficiency or absence in the quantity or pulse pattern of endogenous GnRH secretion.
More Information about this product Drug Information Portal

Other Names for this Disease
  • Rapid-onset obesity with hypothalamic dysfunction, hypoventilation and autonomic dysregulation
See Disclaimer regarding information on this site. Some links on this page may take you to organizations outside of the National Institutes of Health.