CAPS Family Connections

NOMID (Neonatal-Onset Multisystem Inflammatory Disease): Noticing Symptoms

Onset of Symptoms
In NOMID (neonatal-onset multisystem inflammatory disease), people almost always experience symptoms at birth. In a newborn, the physical features of NOMID are often more noticeable than in the other 2 types of CAPS (cryopyrin-associated periodic syndrome), so a doctor may be able to diagnose NOMID quickly.

Duration of Symptoms
It is unknown why NOMID (neonatal-onset multisystem inflammatory disease) symptoms flare up, but this type of CAPS (cryopyrin-associated periodic syndrome) is very serious. Symptoms are constantly present and when they worsen, they can be disabling. Without treatment, they may result in death.

Getting Treatment
It is clear to parents of children with NOMID (neonatal-onset multisystem inflammatory disease) how much they suffer. From the moment they are born, it is a constant battle to keep NOMID (neonatal-onset multisystem inflammatory disease) from getting worse.

A doctor can provide treatment to help relieve symptoms to some degree, but they never completely disappear. Researchers are studying the way genes interact through "signaling pathways" in the cells. This research is helping them gain new insights into the regulation of the chain of events that causes the symptoms.

For patients with all types of CAPS (cryopyrin-associated periodic syndrome), but especially those with NOMID (neonatal-onset multisystem inflammatory disease) who need additional support, there are organizations that can help.