There are 109 people in the Dandy-Walker Syndrome map
118 people with Dandy-Walker Syndrome have joined the DiseaseMaps community map. They have shared 253 first-person answers and 9 stories about living with the condition.
I joined this group in the hope to raise awareness. My son was born with Oesophageal atresia ( now repaired ). A week later we found out he also had dandy walker variant, lissencephaly and spina bifida occulta. Doctors couldn't give us much informati...
Julian was born in 2010 and few weeks after his birth we found out he has Dandy Walker malformation - allegedly because of congenital infection with cytomegalovirus (CMV).
He has severe disabilities and is totally dependent on us - he can't ...
I was pre-diagnosed when my mommy was 20 weeks pregnant, and MRI after birth confirmed my syndrome. I'm in lots of therapy and getting stronger everyday.
My son Sebastian was born in December 1994, in late summer 1995 he started having seizures. After a few EEG's and a brain mri they said he has Dandy Walker Malformation. He was a bit behind meeting his milestones and the doctors had told me not to wo...
2 people with Dandy-Walker Syndrome have taken the SF36 survey. Mean of Dandy-Walker Syndrome is 1410 points (39 %). Total score ranges from 0 to 3,600 being 0 the worst and 3,600 the best. Take the SF36 Survey
