Other Names for this Disease
- Hydrocephalus, agyria and retinal dysplasia
- Hard syndrome
- Hard +/- E syndrome
- Warburg syndrome
- Chemke syndrome
- Congenital disorder of glycosylation with developmental anomaly
- Congenital muscular alpha-dystroglycanopathy with brain and eye anomalies
- Congenital muscular dystrophy
- Congenital muscular dystrophy due to dystroglycanopathy
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Your QuestionMy child was diagnosed with Walker-Warburg syndrome. He is unable to sit, stand, walk or speak and has poor head control. What can we do to help him?
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There is currently no cure or treatment for Walker-Warburg syndrome. Management is generally only supportive and preventive. Individuals who develop seizures are typically treated with anticonvulsants. A few children require surgical procedures, such as shunting for hydrocephalus or correction of encephalocele. Physical therapy can be offered to aid in development or prevent worsening of contractures; however, the benefit of this has not been established. Feeding usually needs to be monitored and in some cases, a supplemental nasogastric or gastric feeding tube may be necessary.
Last updated: 3/23/2011
- Jiri Vajsar and Harry Schachter. Walker-Warburg syndrome. Orphanet Journal of Rare Diseases. August 3, 2006; 1(29):http://www.ojrd.com/content/1/1/29. Accessed 3/22/2011.