Living with Infantile bilateral striatal necrosis
A group of brain conditions in babies and children with loss of skills and movement problems.
Understanding Infantile bilateral striatal necrosis
It is marked by loss of skills (developmental regression) and movement problems that progress to stiffness in all four limbs. It can be familial or sporadic (no family history). It is listed as beginning at any time in life.
Signs & symptoms
GARD doesn't list specific symptoms for this condition yet. Its summary describes:
- Loss of developmental skills
- Writhing, jerky movements (choreoathetosis)
- Muscle tightness and abnormal postures (dystonia)
- Stiffness in all four limbs (spastic quadriparesis)
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 and genetic specialists.
- 3Ask which tests can help
Your care team will decide which exams and tests can confirm the diagnosis.
Care & treatment
- Care team
- Brain and nervous system specialists (neurologists); Genetic specialists (geneticists)
- 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 rare disease patient organizations for support
- 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 lists both autosomal dominant and autosomal recessive inheritance, and says it can also occur with no family history. It doesn't name a gene.
Also known as: ibsn; infantile striatonigral degeneration; infantile striatonigral necrosis
Patient organizations
Rare-disease groups that can help
- 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 Infantile bilateral striatal necrosis.
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