About Our Organization

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The Association of Adults with Hydrocephalus was formed at 510 W Main St, Box 127, Thompsontown, Pennsylvania as a nonprofit organization in 2007 by Lon Diffenderfer, 7 years after being diagnosed with hydrocephalus and 3 years after his first shunt operation. He decided after having great difficulty locating information about how hydrocephalus is diagnosed in adults, how it expresses in adults, and what treatment options are available, he should find a way to make that information more readily available. The development of the organization has been slow as Lon experienced the need for more surgery in 2007, again in 3 years, and yet again 2 years after that (2012). We are hoping that Lon's current streak of good health continues and that there is no need for further surgery. However, as many people with hydrocephalus know, the odds are against it. Infections, blockages, scar tissue and other issues often require the need for the placement of another shunt or an Endoscopic Third Ventriculostomy (ETV). 

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At the AAH, we are passionate about providing patients, family members, caregivers, medical professionals, and the general public with information and education on hydrocephalus in adults to improve awareness of the condition and to help those with the condition and their medical team to make better informed decisions. Since we are a small organization, we currently have many unfulfilled goals and are working to reach them. However, if there is something that you believe is urgently needed on our site, please let us know and we will evaluate your request soon as we are able. Some things that we will be adding in the near future is a list of neurosurgeons and neurologists who specialize in cerebrospinal fluid disorders in adults, a list of organizations which support caretakers, and recent news articles and scientific studies about hydrocephalus. We hope that you find the information provided here to be helpful. 

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IMPORTANT:

The Association of Adults with Hydrocephalus (AAH) does not provide medical advice and recommends that persons seek out a qualified professional medical team to help make the best decisions with regard to their health needs. While the AAH attempts to share information from accredited sources, we do not guarantee the veracity of the information provided and will not be held responsible for any decisions that are made based on such information. All persons are responsible for their the management of their own health. For more details, questions, or comments, Lon Diffenderfer can be reached by writing to the address above or to lon.diffenderfer@adulthydrocephalus.org or by calling +1 888.333.3036.