NOMID: Noticing Symptoms
Onset of Symptoms
In NOMID, 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, so a doctor may be able to diagnose NOMID quickly.
Duration of Symptoms
It is unknown why NOMID symptoms flare up, but this type of CAPS 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 how much they suffer. From the moment they are born, it is a constant battle to keep NOMID 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, but especially those with NOMID who need additional support, there are organizations that can help.
