September is Hydrocephalus Awareness Month. What do you know about this potentially fatal brain disease?

MRI reveals hydrocephalus. Photo by LariBat.

By Lauren Eng

The writer is a resident of Maryland and an undergraduate student at the University of Maryland College Park.

Hydrocephalus occurs when excess cerebrospinal fluid accumulates in the cavities of the brain.

The only known treatment is brain surgery, which often involves implanting a device called a shunt in the head to drain excess fluid.

Unfortunately, shunts are prone to failure over time, requiring surgical replacements.

According to the Hydrocephalus Association, more than 36,000 shunt surgeries are performed each year, an average of one every fifteen minutes, making it the most common reason for brain surgery in children.

As someone who contracted hydrocephalus in his early teens, I still remember what life was like before. I took my good health for granted, casually ignored bumps on my head, and enjoyed thrill rides and bumper cars, which I now avoid for fear of upsetting my shunt.

It was alienating to suddenly experience these difficulties and have to face the very real prospect of having multiple brain surgeries for the rest of my life.

But thanks to the Hydrocephalus Association — a Bethesda-based organization that supports people with the disease — I found a community of all ages who could relate to my new struggles.

In July, for example, I attended the Hydrocephalus Association’s 17th National Hydrocephalus Conference, HA CONNECT, in Austin, Texas.

It was his first in-person conference since the start of the pandemic. The three-day event drew families, friends and “water warriors” who greeted each other with hugs and nudges. It also hosted panels of medical experts and advocates, and featured keynote speaker Dr. Michael Barratt, a NASA astronaut, who spoke about his personal experience developing flight-associated neuro-ocular syndrome. (SANS) in long-term space travel. This disorder has similar symptoms to hydrocephalus and is an encouraging avenue of research to potentially advance treatments for hydrocephalus.

This Hydrocephalus Awareness Month, you can make a difference.

The Hydrocephalus Association will continue to bring national attention to this incurable brain disease. Several cities have already held their annual WALK to End Hydrocephalus to raise critical funds for research, support, education and advocacy efforts.

Marylanders have a choice of two local WALK locations, Baltimore and Washington, DC, on October 1 and 8, respectively. Consider joining a WALK near you and donating to support the over one million Americans living with hydrocephalus. Your generosity will surely have an impact on this strong and resilient community.

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