A Community Rallies Around Girl with ROHHAD

Until recently, the term ROHHAD meant nothing to me.

But, then, I heard about an 11-year-old Canadian child named Denika Bailey who has this rare disorder. The letters stand for:

  • Rapid-onset
  • Obesity with
  • Hypoventilation,
  • Hypothalamic dysfunction and
  • Autonomic
  • Dysregulation.

In addition to obesity, children with ROHHAD suffer from hypothalamic dysfunction and, sometimes, respiratory arrest. It is caused by an abnormality of the endocrine system.

Children with ROHHAD appear normal at birth, however between their first and seventh years, they begin to have symptoms. The most common symptom is a weight gain that often can reach 30 pounds. These kids are abnormally hungry.

Other symptoms can include the inability to maintain normal water levels high or low sodium levels, low thyroid hormone, and low cortisol.

After the rapid weight gain, children with ROHHAD can start to have breathing problems, including sleep apnea (where the person stops breathing for periods of time while asleep), and all children eventually develop alveolar hypoventilation which leads to low oxygen levels and can be life-threatening.

So far, only about 100 cases of ROHHAD are documented in medical literature.

It was first identified in 1965 by another name but was renamed in 2007 when further studies were conducted. It’s not known if any particular population is more at risk than another, but because obesity is on the rise, it’s worth monitoring.

For Denika Bailey and her parents and brother, ROHHAD is not some abstract number—it’s their reality. In January 2017, Denika weighed over 300 pounds. The community has held fundraisers on her behalf, and a prayer page has been set up. On behalf of Patient Worthy, we all send our best wishes to Denika.

Erica Zahn

Erica Zahn

Erica Zahn is passionate about raising awareness of rare diseases and disorders and helping people connect with the resources that may ease their journey. Erica has been a caregiver, and is a patient, herself, so she completely relates to the rare disease community--on a deeply personal level.

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