Have you or your loved one recently been diagnosed with Dandy-Walker? Are you unsure what to do next? This diagnosis can be daunting and overwhelming, but the Dandy-Walker Alliance is here to help.
Hearing you or your loved one has Dandy-Walker may be frightening, but the good news is that it is not progressive, meaning it does not get worse over time. While many families are given a grim prognosis when the diagnosis is made in utero, the overwhelming majority of people with Dandy-Walker do very well.
Every case is different, and there is no one single way to approach a Dandy-Walker diagnosis, but we have listed below some steps to help you make sense of the whole process.
Dandy-Walker in isolation often brings very few complications. However, individuals with Dandy-Walker often have other conditions as well, and treatment varies depending on the severity of co-occurring conditions.
The most common associated condition is hydrocephalus, which is caused by an accumulation of fluid within cavities of the brain called ventricles, resulting in pressure on the brain. Roughly 70 to 80 percent of people with Dandy-Walker also have hydrocephalus, but with early detection and intervention it is treatable with surgery.
We recommend talking to a pediatrician, physician, or neurologist to best understand your or your loved one’s co-occurring conditions and how to best treat them. For questions about hydrocephalus, we suggest seeking the guidance of a neurosurgeon and contacting the Hydrocephalus Association at firstname.lastname@example.org.
Facing a rare disease diagnosis can be daunting and feel lonely. Dandy-Walker may be rare (1 in 10,000 livebirths) but there is a strong community of Dandy-Walker families ready to connect, share stories, offer advice, and serve as resources.
Our Facebook groups can serve as safe forums to discuss Dandy-Walker experiences and seek advice. Signing up for the Dandy-Walker Alliance contact list gives families the opportunity to connect with others in their area.
Many people benefit from early interventions such as occupational, speech, physical, and educational therapies, depending on the individual’s needs. Across the U.S., families are eligible for support programs and therapy through state and local government agencies, including school districts.
Check out the links on our Resources Page for more information on support programs.
YOU can make a difference in the lives of people around the globe who are affected by Dandy-Walker, including you and your loved ones. The Dandy-Walker Alliance is looking for people year round who are willing to provide saliva samples used in genetic research, provide support to other families in your community (and around the world), host awareness and fundraising events, and so much more.
Your personal experiences are vital and important examples of how individuals and their families can thrive after receiving the diagnosis. Sharing your story supports other families and the money we raise goes toward funding research into the genetic causes of Dandy-Walker, spreading awareness, and advocating for families worldwide.