People with NOMID/CINCA almost always start having symptoms from birth.4 A doctor may diagnose NOMID/CINCA quickly in a newborn because symptoms are often more noticeable than in FCAS or MWS 9,10
NOMID/CINCA can be disabling1 and, without treatment, some cases may result in death.11 Treatment can help symptoms to some degree, but they never completely go away.4
It is clear to parents of children with NOMID/CINCA how much they suffer. From the moment they are born, it is a constant battle to keep NOMDI/CINCA from getting worse.
For patients with all types of CAPS, but especially for those who need support for NOMID/CINCA, there are organisations that can help.