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One rare brain condition will unite hundreds in downtown Portland

Head of pediatric neurosurgery at OHSU Doernbecher Children’s Hospital’s will host national conference on hydrocephalus

Leading medical professionals, researchers, patients and their families will gather in downtown Portland for the 13th National Conference on Hydrocephalus. The conference will provide tools and personal connections to address the medical, educational and social challenges of living with hydrocephalus, a chronic condition for which there is no cure.

"Hydrocephalus is a complex disease that requires interdisciplinary, patient-focused care," said Nathan Selden, M.D., Ph.D., F.A.C.S., F.A.P.P., head of pediatric neurosurgery at OHSU Doernbecher Children’s Hospital and medical co-chair for the conference. "By bringing the hydrocephalus association meeting to Portland, we will gain an enormous opportunity to connect families, patients, doctors and other caregivers, helping individual families and advancing our understanding of this disease process."

Hydrocephalus is a condition in which cerebrospinal fluid accumulates in the brain. The only treatment requires brain surgery. The prevalent treatment is implantation of a shunt, a medical device developed more than 50 years ago with a high-failure rate, relegating patients to a lifetime of brain surgery.

For participants, the conference is an opportunity to connect with peers who understand what it means to live with this uncertainty as well as some of the challenges that can accompany with the condition. These can include daily headaches, learning disabilities in children, and other medical conditions such as seizures and vision issues, to name a few. In addition to networking and supporting each other, participants spend three days mixing with leading medical professionals, including neurologists, neurosurgeons, neuropsychologists, nurses, educational consultants and an array of other specialists.

“What makes our conference unique is that we bring patients and caregivers, medical professionals, and medical industry representatives together in a casual environment that facilitates information-sharing, support, and community. There are no barriers or segmentation. A neurosurgeon can be seen eating lunch with four or five families. A neuropsychologist and a mother of a patient can be leading a workshop session together,” explains Karima Roumila, director of education and support for the Hydrocephalus Association.

There are more than 1 million Americans living with hydrocephalus, yet it remains a little-known condition. Anyone can get hydrocephalus. One to two of every 1,000 babies are born with hydrocephalus, making it as common as Down syndrome and more common than spina bifida or brain tumors. People of any age can acquire hydrocephalus at any stage of life due to brain hemorrhage, infection, tumors, trauma. Or, for unknown reasons, people can acquire it through the aging process. Normal pressure hydrocephalus, which primarily affects seniors, is often undiagnosed or misdiagnosed as Alzheimer’s or Parkinson’s disease.

The conference will be held at the DoubleTree by Hilton Portland, 1000 N.E Multnomah Street, Portland, Wednesday, July 9, through Friday, July 11, 2014.

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