Stories of Dandy-Walker Syndrome

STORY
Dandy-Walker Syndrome stories
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...
Dandy-Walker Syndrome stories
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. 
Dandy-Walker Syndrome stories
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 ...
Dandy-Walker Syndrome stories
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...

Tell your story and help others

Tell my story

View more

Dandy-Walker Syndrome forum

QUESTION

Ask a question and get answers from other users.

Ask a question

View more

Statistics of Dandy-Walker Syndrome

1 people with Dandy-Walker Syndrome have taken the SF36 survey. Mean of Dandy-Walker Syndrome is 750 points (21 %). Total score ranges from 0 to 3,600 being 0 the worst and 3,600 the best. Take the SF36 Survey

View more

Find your symptoms soulmates

From now on you can add your symptoms in diseasemaps and find your symptoms soulmates. Symptoms soulmates are people with similar symptoms to you.

Symptoms soulmates

Add your symptoms and discover your soulmates map

Soulmates map

Dandy-Walker Syndrome

Join the map