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Facts to Help a Child: NOMID

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Neonatal-Onset Multisystem Inflammatory Disease (NOMID) is the most rare and most severe genetic disorder subtype of Cryopyrin-Associated Periodic Syndromes (CAPS). All of the Muckle-Wells Syndrome (MWS) symptoms may be experienced by patients with NOMID, but NOMID symptoms are felt all the time and are more severe. These symptoms can also look like those of other conditions.

Like the other subtypes of CAPS, NOMID is caused by abnormalities in the gene NLRP3. This gene normally helps the body develop a protein called cryopyrin. Cryopyrin allows the body to deal with inflammation.

NOMID has many of the same symptoms as Familial Cold Autoinflammatory Syndrome (FCAS) and MWS disorders. Additional NOMID symptoms include

  • Gradual loss of eyesight
  • Overgrowth of bones of the knees
  • Delayed mental development

NOMID is present at birth. In fact, there is a chance of inflammation developing in the mother’s womb, and doctors have observed evidence of inflamed umbilical cords.

Babies with NOMID often have an almost-constant rash. They may also have changes to growth cartilage that can cause lasting damage, often at the knees. It’s common to see decreased muscle tone and lax muscles, sometimes leading to the inability to walk or bear weight on the legs. Some patients with NOMID contract aseptic meningitis, which leads to seizures and developmental problems.