Community Living with Brain Disorder Says NO MORE BS

The Hydrocephalus Association launches #NOMOREBS campaign to bring attention to the lack of  treatment options for the one million Americans living with hydrocephalus, a neurological condition whose only treatment is brain surgery.

Bethesda, Maryland | July 20, 2017

Today, there are over 1 million Americans living with hydrocephalus, a chronic, life-threatening condition marked by excess accumulation of cerebrospinal fluid on the brain. Due to the lack of awareness, funding, and research surrounding the condition, the only treatment available is brain surgery. There is currently no cure. Today marks the start of an aggressive awareness campaign to shed light on this neurological condition. The campaign, #NOMOREBS – No More Brain Surgeries – shares personal experiences and milestones missed due to the shocking number of brain surgeries patients must undergo during their lifetime because of and from other complications from hydrocephalus.

A child can be born with hydrocephalus. What is less understood is that anyone at any time can develop hydrocephalus: from a brain injury, tumor, or infection, among other causes, or, for unknown reasons, as part of the aging process. Its primary treatment is the insertion of a device called a shunt – essentially a small tube and a connected valve – into the brain to drain the excess cerebrospinal fluid to another part of the body. Shunts save lives, but frequently malfunction, become infected, or blocked. It is not uncommon for a person with hydrocephalus to have ten or more shunt-related brain surgeries during the course of their lifetime, and some individuals will undergo more than 100 surgical procedures. Each surgery brings with it the risk of unknown long-term cognitive and health effects, and hydrocephalus can be fatal.

“Our patient community lives with a neurological condition that could necessitate brain surgery without warning. It is not uncommon for children living with hydrocephalus to have more brain surgeries than birthdays in their early years,” stated Diana Gray, CEO of the Hydrocephalus Association. “Hydrocephalus places an incredible physical and emotional burden on the patient’s, family, friends and communities that support them.”

The Hydrocephalus Association is dedicated to eliminating the challenges of living with hydrocephalus for its patient population. In addition to effects from the condition itself, there are secondary impacts of hydrocephalus and undergoing repeated brain surgeries that range from other medical conditions, like seizures, to educational challenges, social-emotional delays, memory issues, and psychological diagnosis.

“Our plans as an association are bold. The struggles our patient population face are real. We cannot continue to be invisible. We must help others understand the urgency of our mission so that they can join us in changing the future of hydrocephalus,” affirmed Amanda Garzon, Marketing Director of the Hydrocephalus Association.

The campaign will run through October 2017 and provide tangible actions people can take to help educate others about hydrocephalus and engage them in the effort to raise much needed awareness and donations for research. For more information, visit the #NOMOREBS website at http://nomorebrainsurgeries.org or call (888) 598-3789.

 

About the Hydrocephalus Association  

Founded in 1983 by the parents of children with hydrocephalus, the Hydrocephalus Association (HA) (http://www.hydroassoc.org/), is the nation’s largest and most widely respected organization dedicated to hydrocephalus. More than 60 percent of HA’s funding comes from individual donations, and approximately 35 percent comes from foundation and corporate grants. HA began funding research in 2009 and has since granted over $6 million to research, making it the largest non-profit and non-governmental funder of hydrocephalus research in the United States. The Hydrocephalus Association’s mission is to promote a cure for hydrocephalus and improve the lives of those affected by the condition.

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