Living with X-linked immunoneurologic disorder
A rare X-linked condition that causes immune weakness and nervous system problems in females.
Understanding X-linked immunoneurologic disorder
Signs begin in the newborn period or infancy. GARD doesn't give more detail in this record.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Repeated respiratory infections
- Increased muscle tone
- Overactive reflexes
- Quick, jerky eye movements (nystagmus)
- Night blindness
- Weakness on one side of the body
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 allergy and immune system specialists and genetic specialists.
- 3Ask which tests can help
Your care team will decide which exams and tests can confirm the diagnosis.
- 4Connect with expert centers
Immune Deficiency Foundation may keep lists of experts for this condition.
Care & treatment
- Care team
- Allergy and immune system specialists (allergists / immunologists); Genetic specialists (geneticists)
- 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
- 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 genes (variants) cause this condition and it follows X-linked inheritance. It doesn't name a gene.
Also known as: immunoneurologic disorder, x-linked; neonatal death immune deficiency; woods black norbury syndrome; woods-black-norbury syndrome; woods-black-norbury syndrome, x-linked dominant; x-linked immunoneurological disorder
Patient organizations
- Immune Deficiency FoundationPrimary immunodeficiency · United States
Broader rare-disease groups
- Global GenesRare Diseases · United States
- National Organization for Rare DisordersRare Diseases · United States
- Genetic AllianceRare Diseases · United States
- RARE FoundationRare Diseases · United States
You are more than your diagnosis
Perspectives from people navigating life with X-linked immunoneurologic disorder.
Explore research for X-linked immunoneurologic disorder
Explore actively recruiting X-linked immunoneurologic disorder studies with HealthSpark.
Find actively recruiting studies for X-linked immunoneurologic disorder with HealthSpark. Share your city to explore research near you.
- 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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