
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
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
- 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 genetic specialists.
- 3Ask which tests can help
Your care team will decide which exams and tests can confirm the diagnosis.
- 4Connect 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
Quick facts
Changes in genes cause this condition. It is autosomal recessive, which means a child inherits a changed copy of the gene from each parent.
Also known as: bilateral striopallidodentate calcinosis childhood-onset; cerebral calcification nonarteriosclerotic idiopathic childhood-onset; ibgc childhood onset
Patient organizations
- Dystonia Medical Research FoundationBasal ganglia calcification, idiopathic, childhood-onset · United States
- United Leukodystrophy FoundationLeukodystrophies · United States
You are more than your diagnosis
Perspectives from people navigating life with Basal ganglia calcification, idiopathic, childhood-onset.
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