Olivier, the only one with his disease in Quebec
CINCA syndrome (chronic, infantile, neurological, cutaneous, articular) is characterized by a skin rash, joint involvement, chronic meningitis, sometimes deafness and ocular manifestations! The disease is inflammatory in nature. Almost every part of the body is affected by inflammation, including the neurological system, liver, spleen, joints and more! CINCA syndrome affects about one person in a million, and is more common in certain regions of the United States. In Canada, only 3 cases have been reported, and my little one is the first in Quebec. The very expensive treatment is a subcutaneous vaccine given every 8 weeks at a cost of $34,000 for life. The treatment consists of controlling the inflammation.
Olivier was born at CHUL in Quebec City on March 20, 2011 at 30 weeks gestation!
Nadia Tremblay, tremblay_nadia@hotmail.com
CINCA syndrome
CINCA syndrome (acronym for “chronic, infantile, neurological, cutaneous, articular”) is also known as Multisystemic Inflammatory Disease of Childhood, Neonatal Multisystemic Inflammatory Disease, Chronic-Infantile-Neurological-Cutaneous-Articular Syndrome and Prieur-Griscelli Syndrome.
NOMID (Neonatal-onset multisystem inflammatory disease).
CINCA (or NOMID) syndrome is part of a group of diseases known as CAPS (cryoporin-associated periodic syndromes), which includes 2 other diseases (Muckle-Wells syndrome and familial auto-inflammatory cold syndrome).
For information on the disease, see Orphanet