Living with Dandy-Walker syndrome
A brain condition affecting the cerebellum, which can cause problems with movement, coordination, and learning.
Understanding Dandy-Walker syndrome
The middle part of the cerebellum (the vermis) is missing or very small. Fluid-filled spaces at the back of the skull are larger than usual. Signs are usually present at birth or appear in the first year. Up to half of people have intellectual disability, and some have learning disabilities.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Missing or small cerebellar vermis
- Enlarged fluid space at the back of the skull
- Buildup of fluid in the brain (hydrocephalus)
- Larger head size (macrocephaly)
- Small cerebellum
- Prominent back of the skull
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.
- 4Connect with expert centers
Hydrocephalus Association may keep lists of experts for this condition.
Care & treatment
- Care team
- Brain and nervous system specialists (neurologists); Genetic specialists (geneticists)
- Expert care
- Expert lists: Hydrocephalus Association
- 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 Hydrocephalus 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
GARD says changes in genes cause this condition. It does not list a specific gene or inheritance pattern.
Also known as: atresia of foramina of magendie and luschka; dandy walker malformation; dandy-walker deformity; dandy-walker malformation; dandy-walker syndrome, isolated cases; dws
Patient organizations
- Hydrocephalus AssociationDandy-Walker syndrome · United States
- Child Neurology FoundationDandy-Walker syndrome · United States
- Dandy-Walker Alliance, Inc.Dandy-Walker syndrome · United States
You are more than your diagnosis
Perspectives from people navigating life with Dandy-Walker syndrome.
Explore research for Dandy-Walker syndrome
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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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