Spina Bifida Family Support
"Families Helping Families"
Stand Up and Be Counted!
Hydrocephalus is a chronic medical condition that can be controlled by a surgically implanted device called a shunt. Unfortunately, although thousands of people have been successfully treated with shunts since the last 1960ís, little is known about the long term outcomes or the quality of life of people with hydrocephalus. As the first generation of people successfully treated for hydrocephalus reach their 30ís and 40ís, and as more infants, children and adults are successfully diagnosed and treated, it is imperative that the needs of our growing community are identified.
The Hydrocephalus Database Project has been created by the 20 year old, nationally acclaimed Hydrocephalus Association to address this issue. Currently, there are no accepted staticís on the incidence, treatment protocols or long-term outcomes of hydrocephalus. With your help, that is about to change.
The goal of the Hydrocephalus Database Project is to create a national registry that will enable the Hydrocephalus Association to collect, store and synthesize information on the diagnosis, treatment and incidence of hydrocephalus, as well at its impact on the lives of people who have hydrocephalus. This information will then help the medical community identify better ways to treat hydrocephalus and provide improved medical, social and educational outcomes for all people with hydrocephalus.
Make Your Voice Heard
We encourage everyone with hydrocephalus, or a family member, to complete the database survey. Itís quick, easy, free and private-but most important, itís an opportunity to make your voice heard. Alone, you or your loved oneís experiences are too easily discounted or marginalized; collectively, our community of voices can have a profound and lasting impact.
Our goal is a database of at least 5,000 people with hydrocephalus, and it all begins with you.
Log onto the database site and complete the short survey.
If you donít have access to the Internet, need assistance, or would rather complete the surgery on paper or by telephone, please call 1.888.598.3789
870 Market Street Suite 705
San Francisco, CA 74102
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