Raises awareness of the leading cause of brain surgery in children.
There are over 1 million Americans living with hydrocephalus, a chronic neurological condition that has no cure and can only be treated with brain surgery. To raise awareness of the condition, Congressman Lloyd Doggett (D-TX) issued a statement in the Congressional Record recognizing September as Hydrocephalus Awareness Month.
Congressman Doggett, along with Chris Smith (R-NJ), co-chairs the Congressional Pediatric and Adult Hydrocephalus Caucus. The Caucus has been instrumental in helping the hydrocephalus community advocate for substantive changes for patients, opening doors to new research opportunities that could result in alternative treatment options, forms of prevention, and a cure.
“As co-chair of the Congressional Pediatric and Adult Hydrocephalus Caucus, I believe Congress has an important role to play in both raising awareness of this condition, as well as in crafting policies that result in better treatments and potentially a cure. I urge my colleagues to join the caucus to learn more about this devastating condition,” Rep. Doggett said in his statement.
Several states and cities have passed Hydrocephalus Awareness Month proclamations, including Texas, Washington, DC, South Carolina, Arkansas, Pennsylvania, Massachusetts, Wisconsin, New York, Indiana, Kentucky, Utah, Maryland, and West Virginia. Throughout September and October, people across the country are raising awareness by sharing facts about the condition on social media and by participating in WALK to End Hydrocephalus events.
“Hydrocephalus is as common as Down syndrome, yet there isn’t wide recognition of the disorder and government funding for hydrocephalus research pales in comparison to other neurological conditions like Parkinson’s or MS,” said Diana Gray, President and CEO of the Hydrocephalus Association. “We applaud Representative Doggett and members of the Congressional Hydrocephalus Caucus for helping to increase public recognition of this condition, which affects people of all ages and from all walks of life.”
Each year, one in every 770 babies develops hydrocephalus, a complex, life-threatening condition marked by excess accumulation of cerebrospinal fluid on the brain. However, anyone at any time can develop hydrocephalus from a brain injury, tumor, or infection, and some people over 60 develop Normal Pressure Hydrocephalus, which is often misdiagnosed as Alzheimer’s, dementia or Parkinson’s. Some two-thirds of our current and former military service members suffering from moderate to severe traumatic brain injuries are at risk of developing hydrocephalus.
The primary 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.
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. Since 2009, HA has invested over $12 million in 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 find a cure for hydrocephalus and improve the lives of those impacted by the condition.