Fox News Health Reporter Jessica Mulvihill Moran follows the journey of Neil and Naomi Warner as they sought out an explanation for Neil’s gradual cognitive and physical decline, first diagnosed as dementia. Presenting with two of the three classical symptoms of normal pressure hydrocephalus (NPH) – problems walking and short term memory loss – Neil was dismissed during an initial neurological consultation with a diagnosis of early-stage dementia and told to come back in a couple of years when he was “…falling down and drooling,” recalled Naomi. A second consult with Dr. Norman Relkin of Weill Cornell Medical College, a neurologist with extensive knowledge and experience with NPH and a Principal Investigator of the HA-funded Adult Hydrocephalus Clinical Research Network, yielded not only a proper diagnosis, but a treatment as well, that has reversed his symptoms and allowed Neil to return to a full life.
It is stories like this one by Fox News, reaching large audiences on a national level, that play an important role in our continued efforts to educate the public and raise awareness about hydrocephalus and normal pressure hydrocephalus. It is estimated that 80% of cases of NPH go undiagnosed or misdiagnosed, since symptoms of NPH mimic untreatable dementias and/or may be confused with normal aging. Similar to the situation with Neil Warner, many physicians look no further after diagnosing dementia or after attributing symptoms to “old age.” This should be of particular concern right now as the large “baby boomer” population has reached the age where the NPH incidence increases. A newly released study in Neurology entitled, “The Incidence of Idiopathic Normal Pressure Hydrocephalus (iNPH),” (Jaraj et al., Neurology, 2014) provides estimates on the extent of the problem. They estimate that approximately 2 million persons in Europe and 700,000 persons in the United States have iNPH. With proper identification and treatment, adults with NPH can experience significant improvements in their symptoms and quality of life, such as their ability to care for themselves and to work, allowing them to remain in a home environment, a significant cost savings for the family and society.
The National Institutes of Health (NIH) are currently funding only $500,000 of research looking into the treatment of NPH. At the Hydrocephalus Association, we do not think this is enough. In order to improve the state of research, HA has funded the creation of the Adult Hydrocephalus Clinical Research Network (AHCRN), which officially launched in October 2014. This effort, led by Dr. Mark Hamilton of University of Calgary, is a group of physicians collaborating to study the condition and standardize the treatments to improve outcomes.
The Hydrocephalus Association, along with its Medical Advisory Board, will continue to raise awareness for NPH as well as to provide information and support resources to the NPH community. If you need answers to your questions about NPH, you can turn to HA’s NPH Page or download the HA publication About Normal Pressure Hydrocephalus: A Book for Adults and Their Families. You can also ask questions of HA’s Hydrocephalus Resource Library.
Thank you to Fox News for helping raise awareness and potentially helping tens of thousands of people receive proper diagnosis and treatment of NPH with the ultimate benefit of getting their lives back.