Living with Chronic infantile neurological, cutaneous and articular syndrome
A rare inherited inflammatory condition, also called NOMID, with a skin rash from birth and effects on the brain, joints, hearing, and vision.
Understanding Chronic infantile neurological, cutaneous and articular syndrome
People have a skin rash from birth that lasts throughout life. Other symptoms may include headaches, seizures, and vomiting from chronic meningitis (inflammation around the brain), intellectual disability, episodes of mild fever, and hearing and vision problems. GARD lists onset in the newborn period and infancy.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Skin rash from birth
- Headaches, seizures, and vomiting from chronic meningitis
- Mild fever episodes
- Hearing and vision problems
- Joint differences
- Tiredness and enlarged liver
Not everyone has every symptom. GARD's list comes from the Human Phenotype Ontology.
Diagnosis
- 1Talk with your doctor
Share the symptoms you've noticed, when they started and your family health history. Notes and photos can help.
- 2See a specialist
Specialists who may be involved include autoimmune and inflammatory disease specialists, allergy and immune system specialists, bone and joint specialists and brain and nervous system specialists.
- 3Consider genetic testing
Changes in NLRP3 are linked to this condition. Genetic testing and counseling can help confirm a diagnosis and explain what it means for your family.
- 4Connect with expert centers
Immune Deficiency Foundation may keep lists of experts for this condition.
Care & treatment
- Care team
- autoimmune and inflammatory disease specialists (rheumatologists); Allergy and immune system specialists (allergists / immunologists); Bone and joint specialists (orthopedists or orthopedic surgeons); Brain and nervous system specialists (neurologists)
- Expert care
- Expert lists: Immune Deficiency Foundation
- Treatment
- GARD doesn't list specific treatments for this condition. Your care team will tailor care to your symptoms.
- Research
- Clinical trials and observational studies may be options. See the research section below.
General information, not medical advice. Your care team makes the decisions.
Everyday life
Living with a rare condition is easier with support.
- Connect with Immune Deficiency Foundation and other patient organizations
- Keep notes on symptoms, changes and questions for appointments
- Ask about patient registries that help research
- Look into financial aid and travel resources for care visits
Quick facts
GARD says changes in the NLRP3 (CIAS1) gene cause this condition, found in about 50% of people with it. It is autosomal dominant, so one changed copy can be enough.
Also known as: chronic infantile neurological cutaneous and articular syndrome; chronic infantile neurological cutaneous articular syndrome; chronic neurologic cutaneous and articular syndrome; cinca; cinca - chronic infantile neurological, cutaneous and articular syndrome; cinca syndrome
Patient organizations
- Immune Deficiency FoundationPrimary immunodeficiency · United States
- Children's Skin Disease FoundationSkin diseases · United States
You are more than your diagnosis
Perspectives from people navigating life with Chronic infantile neurological, cutaneous and articular syndrome.
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