Imagine being 19 months old and already having had 10 brain surgeries or 21 years old and having had over 140 brain surgeries. For the over 1 million Americans living with hydrocephalus, a chronic, life-threatening condition marked by excess accumulation of cerebrospinal fluid on the brain, this is their reality because the only treatment available is brain surgery. To bring attention to the limited treatment options, the Hydrocephalus Association launched #NOMOREBS – No More Brain Surgeries – an aggressive awareness campaign that aims to raise $20 million by 2020 to accelerate research and expand education and support services for this chronic neurological condition. The campaign highlights the shocking number of brain surgeries patients must undergo during their lifetime due to hydrocephalus.
One in every 1,000 babies is born with hydrocephalus. However, anyone at any time can develop hydrocephalus from a brain injury, tumor, or infection, and people over 60 develop Normal Pressure Hydrocephalus, which is often misdiagnosed as Alzheimer’s, dementia or Parkinson’s. The predominate treatment for hydrocephalus is the insertion of a device called a shunt –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 throughout 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.
“There’s always complications with surgeries. There was always that thought in their mind that they may not see me ever again,” says 16-year-old Nicholas, a hydrocephalus patient highlighted through the #NOMOREBS campaign who has endured 12 brain surgeries. The campaign highlights a number of hydrocephalus patients, from toddlers to seniors, who are struggling with multiple brain surgeries. Patients like Lauren, who is 18 and had 4 brain surgeries; 29-year-old Jennifer who had 110 brain surgeries; and 19-month-old Aiden who had 10 brain surgeries.
The Hydrocephalus Association (HA) is dedicated to eliminating the challenges of living with hydrocephalus for its patient population by investing in innovative research and providing comprehensive support and education services to patients and their loved ones. Since 2009, HA has committed more than $7 million to high-impact research into new treatments, means of prevention and, ultimately, a cure. Today, HA is the leading private funder of hydrocephalus research. HA-funded research has helped reduce shunt infections by 30 percent.
“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. “Through #NOMOREBS, we hope to shed light on the incredible toll this condition takes on patients’ lives and to encourage people to help us reach our goal of raising $20 million by 2020 so we can accelerate research into new treatment options and, ultimately, a cure.”
To make a donation and join the campaign, visit the #NOMOREBS website at https://nomorebrainsurgeries.org.
About the Hydrocephalus Association
Founded in 1983 by the parents of children with hydrocephalus, the Hydrocephalus Association (HA) 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 $7 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.