Raising awareness of the over 1 million Americans living with hydrocephalus and its status as the leading cause of brain surgery in children.
Nineteen. That’s how many days we had with you before we realized how much you were up against— Beka Burns, Benaiah's Mom
BETHESDA, MD, UNITED STATES, September 6, 2024 /
EINPresswire.com/ -- 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 in every 770 babies develops hydrocephalus, making it as common as Down’s syndrome and more prevalent 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 currently has no cure, and the standard treatment—a surgically implanted shunt—has one of the highest failure rates of any medical device. Many patients face multiple surgeries throughout their lives.
Symptoms can range from headaches, nausea, and fatigue to severe developmental and cognitive impairments in children. Despite these challenges, with the right care, treatment, and support, individuals with hydrocephalus can lead full and vibrant lives.
A Personal Story: One Family's Fight Against Hydrocephalus
During Hydrocephalus Awareness Month, we're sharing Benaiah's story, 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.
Click here to read the full story of
Benaiah's Journey.
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.
Judy Froehlich
Hydrocephalus Association
+1 407-463-6305
email us here
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