One rare brain condition will unite hundreds in downtown Portland

05/13/14  Portland, Ore.

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.

About the Hydrocephalus Association

The Hydrocephalus Association (HA) is a charitable organization dedicated to eliminating the challenges of hydrocephalus by stimulating research and supporting people who are affected by this condition. Incorporated as a non-profit in 1986, HA is now the nation’s largest and most widely respected organization dedicated solely to serving those affected by hydrocephalus. HA has been instrumental in creating a community of individuals, families and health care professionals addressing the complexities of hydrocephalus in all age groups.

About OHSU Doernbecher Children’s Hospital

OHSU Doernbecher Children’s Hospital ranks among the nation’s "Best Children’s Hospitals*," is one of 21 members of the Children’s Oncology Group’s Phase 1 and Pilot Consortium, and ranks 39th for NIH awards to children's hospitals and their university-affiliated Department of Pediatrics.** Nationally recognized physicians and nurses provide a full range of specialty and subspecialty care to more than 200,000 children annually in a patient- and family-centered environment. OHSU Doernbecher specialists travel throughout Oregon and Southwest Washington, providing specialty care to more than 3,000 children at more than 200 outreach clinics in 15 location. Using state-of-the-art, secure two-way video and audio communication, OHSU Doernbecher’s Telemedicine Network connects pediatric intensivists and neonatologists to emergency room physicians statewide to help evaluate time-critical pediatric patient needs and assist with treatment plans.

*U.S. News & World Report 2013-14 Best Children’s Hospitals
** National Association of Children’s Hospitals and Related Institutions