Living with Neurodegeneration with brain iron accumulation 2B
A brain condition caused by changes in the PLA2G6 gene, also called atypical neuroaxonal dystrophy.
Understanding Neurodegeneration with brain iron accumulation 2B
It is also called atypical neuroaxonal dystrophy. It is different from infantile neuroaxonal dystrophy, which starts earlier and has different symptoms.
Signs & symptoms
GARD doesn't list specific symptoms for this condition yet.
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
Your doctor may refer you to a specialist who knows rare conditions.
- 3Ask which tests can help
Your care team will decide which exams and tests can confirm the diagnosis.
Care & treatment
- Care team
- A doctor familiar with rare conditions, plus specialists as needed
- Expert care
- Ask about multidisciplinary care centers for rare conditions
- 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 NBIA Disorders Association 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
It is caused by changes in the PLA2G6 gene. A child inherits a changed copy of the gene from each parent (autosomal recessive).
Also known as: anad; atypical neuroaxonal dystrophy (anad); nbia2b; neuroaxonal dystrophy, atypical; neurodegeneration with brain iron accumulation type 2b; neurodegeneration with brain iron accumulation, pla2g6-related
Patient organizations
- NBIA Disorders AssociationNeurodegeneration with brain iron accumulation 2B · United States
- NBIAcureNeurodegeneration with brain iron accumulation 2B · United States
You are more than your diagnosis
Perspectives from people navigating life with Neurodegeneration with brain iron accumulation 2B.
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