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Hydrocephalus Awareness Month by Emily Ball


September is Hydrocephalus Awareness Month. Hydrocephalus is a neurological condition caused by an abnormal buildup of cerebrospinal fluid within the ventricles or brain cavities. It’s controlled by a device called a shunt that regulates the flow of the fluid. Hydrocephalus can be present at birth or acquired afterward. Both children and adults can have this condition. There are communities online where people with the condition and their families can connect and which can help families and individuals. Head injuries, intraventricular hemorrhage aka strokes, or brain tumors are some causes of the condition. Some symptoms of untreated hydrocephalus in children are headaches, blurred vision, and balance issues, as well as cognitive issues.  

My connection with this condition is that I had a stroke at birth and a brain bleed that led to multiple disabilities, including hydrocephalus. As a small, premature infant, I had multiple surgeries until the neurosurgeons could finally get the shunt to work.

Another issue is problems with short-term memory which I struggle with. My family tells me when I woke up from my first (that I remember) shunt surgery at age 5 I said, “I feel better now!” “Can I go home?” My parents laughed and said no, I had to hang out with the nurses for the night. Everything was fine until the summer of 2006  at age 14. My family and I were on vacation, and I didn’t feel right. Fast forward to the drive home, I became violently ill, and my mom did the one thing she and I dreaded: called my neurosurgeon. I had to have surgery that night. A few weeks later, that first shunt failed so I had to have surgery again. My nurses on the pediatric unit were awesome, very friendly, and reassuring. I’m still bummed I missed a concert but I’m making up for it now! This was right before high school started, so it made my freshman year difficult. In hindsight, having my head shaved was actually “in” in 2006 and my hair grew fast.

Hydrocephalus affects people in many ways but that doesn’t stop us from living full lives. We graduate high school, go to college, have careers, and do everything someone living without the condition can do. I hope you’ve enjoyed my informational story about hydrocephalus. Here is a link to the Hydrocephalus Association website with more information about the condition. https://www.hydroassoc.org/about-hydrocephalus/

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