Living with CANOMAD syndrome
A rare long-term immune condition that damages nerves, affecting balance, sensation, and eye movement.
Understanding CANOMAD syndrome
The name stands for Chronic Ataxic Neuropathy, Ophthalmoplegia, IgM paraprotein, Cold Agglutinins, and Disialosyl antibodies. It usually shows up in adults and older adults. GARD says it is caused by anti-diasialosyl antibodies in the body.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the signs:
- Loss of muscle, tendon, and joint sensation
- Unsteady walking and poor balance (ataxia)
- Tingling around the mouth or in the arms and legs
- Paralysis of the eye muscles
- Trouble swallowing and speaking
- Rarely, weakness of the breathing muscles
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 brain and nervous system specialists.
- 3Ask which tests can help
Your care team will decide which exams and tests can confirm the diagnosis.
- 4Connect with expert centers
The Foundation for Peripheral Neuropathy may keep lists of experts for this condition.
Care & treatment
- Care team
- Brain and nervous system specialists (neurologists)
- Expert care
- Expert lists: The Foundation for Peripheral Neuropathy
- 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 The Foundation for Peripheral Neuropathy 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 CANOMAD syndrome is caused by anti-diasialosyl antibodies in the body. These are immune proteins that react against the body's own tissue.
Also known as: canda syndrome; canomad (chronic ataxic neuropathy, ophthalmoplegia, monoclonal igm protein, cold agglutinins and disialosyl antibodies) syndrome; chronic ataxic neuropathy-ophthalmoplegia-igm paraprotein-cold agglutinins-disialosyl antibodies syndrome; chronic ataxic neuropathy, ophthalmoplegia, monoclonal igm protein, cold agglutinins and disialosyl antibodies; chronic ataxic neuropathy, ophthalmoplegia, monoclonal immunoglobulin m protein, cold agglutinin and disialosyl antibody syndrome; chronic sensory ataxic neuropathy with anti-disialosyl igm antibodies
Patient organizations
- The Foundation for Peripheral NeuropathyPeripheral neuropathy · United States
- Neuropathy Action FoundationPeripheral neuropathy · United States
You are more than your diagnosis
Perspectives from people navigating life with CANOMAD syndrome.
Explore research for CANOMAD syndrome
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- Recruiting studies from ClinicalTrials.gov
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- Eligibility is confirmed by the study team
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Powered by HealthSpark, our AI chat helper · Study information from ClinicalTrials.gov · Eligibility is confirmed by the study team.
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