Hydrocephalus Awareness Month Spotlights Millions Affected by this Chronic Brain Condition
Raising awareness of the leading cause of brain surgery in children.
Bethesda, MD, Sept. 5, 2024: More than 1 million Americans live with hydrocephalus, a chronic neurological condition caused by an abnormal buildup of cerebrospinal fluid (CSF) in the brain. With no cure, it can only be managed through brain surgery. September is Hydrocephalus Awareness Month, dedicated to raising awareness and understanding of this condition.
One out of every 770 babies will develop hydrocephalus, making it as common as Down’s syndrome and more common than spina bifida or brain tumors. An estimated 800,000 older Americans are believed to have normal pressure hydrocephalus (NPH), but often are misdiagnosed as Alzheimer’s, Parkinson’s, or dementia. When correctly diagnosed and treated, the patient often can return to full functioning.
Take a moment to watch this short PSA from Danny Bonaduce, who was recently diagnosed with NPH.
Hydrocephalus is currently incurable, and the standard treatment—a surgically implanted shunt—has one of the highest failure rates of any medical device. Many patients require repeated surgeries throughout their lives. Common symptoms range from headaches, nausea, and fatigue to severe developmental and cognitive impairments in children. Despite these challenges, individuals with hydrocephalus can lead full and vibrant lives with the proper care, treatment, and support.
A Personal Journey: One Family’s Fight Against Hydrocephalus
As part of Hydrocephalus Awareness Month, we want to highlight the story of Benaiah, whose journey with hydrocephalus began just 19 days after birth. His parents faced an emotional rollercoaster, discovering how much Benaiah had been quietly fighting on his own.
“Nineteen. That’s how many days we had with you before we realized how much you were up against…”
This powerful account shows the daily struggles, resilience, and hope experienced by families navigating life with hydrocephalus. Benaiah’s story reflects the challenges faced by so many and underscores the importance of increased awareness, research, and support for those living with this condition.
For the full story, click here: Link to Story
This September, we invite the media to join us in amplifying the voices of those affected by hydrocephalus and driving the conversation toward a future where better treatments and a cure are within reach.
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 $15.5 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.