subject: Dandy Walker Support Groups [print this page] Dandy Walker Support Groups Dandy Walker Support Groups
Dandy Walker Support Groups
The one thing we discovered during our pregnancy was that there was no sign of any support groups in Northern Ireland, the United KIngdom or in Ireland. We had been searching through the internet and discovered that Dandy Walker Syndrome was some type of brain deformity. We had also discovered that it could be a deformity of the cerebellum and the presence of cyst in the lower portion of the brain.
There appeared to be a few references to various medical journals but we were seeking support from other parents who had been through similar experiences. That was more important to us than reading some medical websites with complicated medical terms which we didn't fully understand.
We read things like
"The deformity involves an area in the back of the brain that controls movement and cognitive learning. In many cases, there is also an abnormal accumulation of cerebrospinal fluid within the ventricles of the vein."
When you are faced with the situation in real life then words like this can seem cold, even though they are informative. We found quite a few sites that contained links to other sites and though we searched through them, we failed to find many that offered us any kind of support or comfort in such a desperate situation. That would have been very beneficial for us at the outset, but alas we could find no such solace.
I suppose like any couple we were looking initially to understand Dandy Walker and looked for any kind of information possible. We discovered quickly that the picture looked particularly gloomy and we found little hope.
Causes of Dandy Walker
The causes of this syndrome are still mostly unknown and we really don't know how much research there has been. Recent studies performed have shown a strong genetic component behind the Dandy Walker disease. It is possible for parents of children with Dandy-Walker Syndrome to undergo genetic testing if they decide to have other children. What we don't know is which countries is thtis available to. It would be great if it was widely available it could give parents more reliable information at a much earlier stage. The issue then and a potential quandry, is are we now interfering with nature? That is probably a moral dilemma but one which each parent will have their own view on, and we are not here to judge.
Treatment
To the very best of our knowledge, there is no specific treatment for children affected by Dandy-Walker disorder. We have also discovered that any potential intervention is usually aimed at treating the symptoms that are associated with the disorder.All we can do for now is to help support, listen and share our understanding of our own journey and the journey of others willing to share this information.
