Dandy Walker Syndrome is a rare congenital condition which is usually diagnosed in early childhood. Despite its uncommon status, this disease is one of the most common abnormalities of the cerebellum (the part of the brain where it develops), as it is believed that this disease affects 1 out of every 2,500 newborns. In the United States alone more than 40,000 people have been diagnosed with this condition, and many other individuals around the world live with the syndrome without ever being adequately diagnosed.
If you or anyone you know are concerned about Dandy Walker Syndrome or think that might be affected by it, it is very important that you look for accurate and reliable information about this condition. Being knowledgeable about its symptoms, the tests used to diagnose it, the treatments available, its prognosis, and how this disease can affect your everyday life are all very valuable elements when it comes to coping with a rare condition such as this one. It might also come in handy to learn about other people who are in the same situation and to find out about the strategies they use to minimise the negative effects that Dandy Walker Syndrome can have in the lives of those affected. Below you will find a list of informative websites and online resources to help you gain a better understanding about this condition.
This website is available at www.dandy-walker.org and should be the first port of call for anyone looking for reliable information about Dandy Walker Syndrome. The contents are reviewed by an advisory board that consists of several paediatric, neurosurgery, and genetics specialists, as well as researchers from the top US institutions. This website offers a wealth of medical articles, educational resources, and newsletters with the latest findings about this little known condition. Moreover, the Alliance also offers support and advice to families whose children are affected by this disease.
This site (available neurosurgery.ucla.edu/dandy-walker-syndrome) is run by the prestigious University of California and offers easy to understand information about the symptoms, treatment, and prognosis of children affected by Dandy Walker Syndrome. Although the site is based in the United States, international patients are welcome to search their physician directory and to contact a specialist should they wish to do so.
At www.netdoctor.co.uk/ate/childrenshealth/200255.html you can find a detailed explanation of what Dandy Walker Syndrome is, the parts of the brain affected, the most common symptoms, and the most common ways of managing and treating the disease.
Up to 70 percent of patients affected by Dandy Walker Syndrome also suffer from hydrocephalus, as both conditions are closely related. At www.hydroassoc.org it is possible to find trustworthy information about this condition and to find a local support group.
This UK-based website offers accurate information about every aspect of Dandy Walker Syndrome, from its symptoms to what parents need to know in terms of prenatal diagnosis. More importantly, this website allows the relatives of those affected to get in touch with other families who are also caring for a child with this condition. The site can be visited at www.cafamily.org.uk/medical-information/conditions/d/dandy-walker-syndrome/