Where are you all from?

Dandy Walker Syndrome
#1

It may be a silly question but i wonder where you are all from?
I asked our dctor today if they new of any one else in Sweden with DWS but they had no answer. Its intresting to now because we have different options it seems depending on where we live,
lots of love to you all from Eva & Engla (Sweden)

#2

Hi

I am a 35 year old adult with dandywalker syndrome. I live in the United States, and was also told that there was only a few people with it and he didn’t know any either, but the internet has opened up a whole new world and way to connect with others hasn’t it.

#3

We live here in Texas, USA. My 20 month old son has Dandy Walker. And I agree with Kittycat about the internet opening up alot of doors so that we may meet others that are dealing with the same problem. I wanna learn more about this, but not through Drs but through people who are living with Dandy Walker.

#4

I’m 39 and have DW Variant. I live in North Carolina. I was born and raised in Missouri though and moved to North Carolina in 2004. I was actually just diagnosed a few weeks ago. I can’t even get into the neurologist til January which is very scary cause I’ve been having quite a few symptoms. The headaches alone are extremely frustrating and disrupt all my daily activities.

#5

My son had Dandy Walker at birth that repaired itself by age 1 or so supposedly. We are in Portland, Oregon. I’ve lived all over but grew up mainly in St. Louis suburbs. Where did you live in MO?

Sue

To: s2adi@msn.com
From: dws-cpt9869@lists.careplace.com
Subject: Re: [dws] Where are you all from?
Date: Sat, 25 Oct 2008 15:13:58 -0400

#6

I was born in Jefferson City and raised about 20 minutes east of there in a very small town.

#7

My Dad used to go there for work sometimes but I never spent much time there.

To: s2adi@msn.com
From: dws-cpt9869@lists.careplace.com
Subject: Re: [dws] Where are you all from?
Date: Sat, 25 Oct 2008 16:35:29 -0400

#8

Hi sir or mam,

Your son is so lucky to have DW repair itself. Did he need any medical intervention, though from what you typed it doesn’t sound like it, Has he had any other problems since, just curious, but count your blessings as it sounds as if he is in good health. Jenn

----- Original Message ----
From: mamazuzi dws-cpt9869@lists.careplace.com
To: jenn1972@sbcglobal.net
Sent: Saturday, October 25, 2008 3:27:11 PM
Subject: Re: [dws] Where are you all from?

#9

I do count my blessings. He did not have any medical intervention for it and we are wondering what, if any of his current symptoms might be a result of the DW… developmental delays, sensory issues, etc. But we are lucky.

To: s2adi@msn.com
From: dws-cpt9869@lists.careplace.com
Subject: Re: [dws] Where are you all from?
Date: Sat, 25 Oct 2008 19:51:12 -0400

#10

Hi my four year old son has dandy walker syndrome. We live in Sydney, Australia and i only know of one other child with dws here. Most doctors, therapists etc have never heard of it.