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Living with Basal ganglia calcification, idiopathic, childhood-onset

A rare genetic condition where calcium builds up in parts of the brain and damages nerve cells.

Understanding Basal ganglia calcification, idiopathic, childhood-onset

Idiopathic childhood-onset basal ganglia calcification is a rare condition in which calcium builds up in several parts of the brain.

The calcium buildup leads to nerve cell damage. It is also called bilateral striopallidodentate calcinosis or idiopathic basal ganglia calcification. It happens even though blood calcium and parathyroid hormone levels are normal, so problems like low parathyroid hormone or pseudohypoparathyroidism do not cause it.

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

  1. Talk with your doctor

    Share the symptoms you've noticed, when they started and your family health history. Notes and photos can help.

  2. See a specialist

    Specialists who may be involved include genetic specialists.

  3. Ask which tests can help

    Your care team will decide which exams and tests can confirm the diagnosis.

  4. Connect with expert centers

    Dystonia Medical Research Foundation and United Leukodystrophy Foundation may keep lists of experts for this condition.

Care & treatment

Care team
Genetic specialists (geneticists)
Expert care
Expert lists: Dystonia Medical Research Foundation, United Leukodystrophy 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 Dystonia Medical Research 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
Bring these questions to your next doctor visit
Is genetic testing available to confirm this diagnosis?
Which specialists should follow my child's brain health?
What does it mean that my child's blood calcium levels are normal?

Quick facts

InheritanceAutosomal Recessive

Changes in genes cause this condition. It is autosomal recessive, which means a child inherits a changed copy of the gene from each parent.

Genetic

Also known as: bilateral striopallidodentate calcinosis childhood-onset; cerebral calcification nonarteriosclerotic idiopathic childhood-onset; ibgc childhood onset

Patient organizations

Source: NIH GARD · Basal ganglia calcification, idiopathic, childhood-onsetGARD ID 9598 · GARD page updated September 2026 · Plain-language summary by Know Rare; editorial review pending. General information, not medical advice.

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