Coming Together for Hydrocephalus Awareness

Today is Hydrocephalus Day 💙

Hydrocephalus is more than a medical term—it’s a journey, a challenge, and for many of us, a daily reality. It’s a neurological condition where excess cerebrospinal fluid (CSF) builds up in the brain. Without treatment, it can cause dangerous pressure, severe symptoms, and even be life-threatening.

The most common treatment is a ventriculoperitoneal (VP) shunt—a small device surgically placed to drain excess fluid and regulate pressure. While they’re not perfect (they can fail, block, or require revisions), shunts are lifelines. For people like me, they mean the difference between life and death.

Hydrocephalus isn’t rare to those of us who live with it every single day. It’s not just a diagnosis—it’s a lifelong cycle of surgeries, recovery, setbacks, and resilience.

My Story

My diagnosis wasn’t the “typical” path. I was 18 when I developed hydrocephalus after a traumatic brain injury. For years I thought my symptoms—headaches, fatigue, confusion—were just stress.

Then in 2012, just three months postpartum, everything changed. A scan revealed a long-standing blockage that had worsened, and I was rushed into emergency brain surgery. My only option was a VP shunt. Terrified as I was, that shunt saved my life.

Since then, I’ve had multiple brain surgeries, fought through recovery after recovery, and learned to live with something many people don’t even know exists. It hasn’t been easy—but I’m still here. Still moving forward. Still advocating for awareness.... or at least trying to.

Why Awareness Matters

• 1 in every 770 babies is born with hydrocephalus.

• People of all ages—infants, children, and adults—can develop it due to trauma, tumors, infections, or unknown causes.

• There is no cure. The shunt, though imperfect, remains the most common treatment option.
  

When shunts fail, it can be life-threatening within hours. That’s why awareness matters: so people understand the urgency, recognize the signs, and support research for better treatments—and one day, a cure.

Hydrocephalus is not “just a headache.” It’s storms in our brains, endless surgeries, and a lifetime of resilience.

Shunt Happens 💙

That’s why I created Shunt Happens—to connect, advocate, and build community. Hydrocephalus may be invisible to the outside world, but the journey unites us. By sharing our stories—whether as patients, families, caregivers, or advocates—we shine light on a condition too often overlooked.

So today, I share my story to remind you: you are not alone.

I invite you to share yours in the comments. Advocacy begins with one voice—but together, we are stronger.

If you’re reading this and feel like it won’t get better, please don’t give up. I’ve been there too. Even with the bad days, there are brighter ones ahead—days you’ll look back and say: I did that. I survived. I kept moving.

If you ever need someone to talk to or have a question, please connect with me on my social media or contact me through my site.

With love,

CT 💙