Hydrocephalus Awareness Month

September is Hydrocephalus Awareness Month.

So, apologies in advance, but you’re going to see a lot of hydrocephalus on my social media and website this month.

Actually, I take that back.

I’m not sorry.

Because before I was diagnosed with hydrocephalus, I didn’t really know what it was either. I certainly didn't understand how dramatically it could change someone's life.

I was diagnosed at 18 years old, shortly after becoming a mom. I remember hearing the word hydrocephalus, running into another room, and crying.

It sounded serious.

Because it was.

What I couldn't have known then was just how much that diagnosis would become part of my story.

What Is Hydrocephalus?

Hydrocephalus is a neurological condition involving an abnormal buildup of cerebrospinal fluid in the brain. More than one million Americans are living with it, and it can affect anyone at any age. There is currently no cure, and treatment requires brain surgery.

One of the most common treatments is a shunt — a medical device surgically implanted to redirect excess cerebrospinal fluid away from the brain.

For someone like me, a shunt isn't some random piece of medical equipment.

It's something I depend on to live.

And when it stops working properly, there isn't a pill I can take or a quick procedure that magically fixes everything.

Sometimes, the answer is another brain surgery.

Some People Have Tattoos. I Have Scars.

I used to look at my surgical scars differently.

They were reminders of shaved hair, staples, incisions, hospital rooms, pain and everything hydrocephalus had taken from me.

Now?

Some people have tattoos. I have scars.

And every single one tells a story.

My scars aren't something I need to hide beneath my hair. They're evidence that I've been cut open, stitched and stapled back together, healed, and kept going.

They tell a story that can't always be seen when someone looks at me today.

Because that's another part of living with hydrocephalus:

You don't always look sick.

Someone can see me working, laughing, traveling, hiking or living my everyday life without realizing what has happened underneath my hair.

They don't see the surgeries.

They don't see the headaches.

They don't see the dizziness or blurry vision.

They don't see the fear that can come when something suddenly feels different and you have to ask yourself the question so many people with shunts know far too well:

Is it my shunt?

When a Shunt Becomes Part of Everyday Life

Living with a VP shunt means learning your body in a way I never expected.

A headache isn't always just a headache.

Dizziness isn't always something you can casually ignore.

New neurological symptoms can carry an entirely different weight when you know your medical history.

And sometimes, scans don't tell the entire story.

I've experienced firsthand what can happen when concerns about a shunt aren't properly investigated. A damaged shunt went untreated for almost two years while my health declined.

Eventually, that decline nearly cost me my life.

That experience changed me.

It also changed the way I advocate for myself.

Hydrocephalus Has Affected More Than My Brain

One thing I want to talk about more openly during Hydrocephalus Awareness Month is everything that happens outside the operating room.

Because surviving brain surgery doesn't mean everything immediately goes back to normal.

There is recovery.

There is fear.

There can be trauma associated with hospitals and medical care.

There are headaches, migraines, dizziness and other symptoms that can interfere with everyday life.

And there is the mental and emotional weight of knowing that the medical device inside your body could someday need another revision.

I've struggled with that part more lately, and I think it's important to say it out loud.

Awareness shouldn't only show the inspirational moments.

It should make room for the difficult ones, too.

Why I'm Sharing My Hydrocephalus Story

The Hydrocephalus Association's theme for Hydrocephalus Awareness Month 2026 is “What Hydrocephalus Means to Me.” Throughout September, they're highlighting the different ways this condition becomes part of people's lives — including scars, shunts, scans, milestones and personal experiences.

So, what does hydrocephalus mean to me?

It's complicated.

Hydrocephalus means brain surgery.

It means scars.

It means shunts and revisions.

It means headaches and uncertainty.

It means surviving things I never imagined I'd have to survive.

But it also means finding my voice.

It means advocating for myself and other patients.

It means talking about the things people don't always see.

And it means using the scars I once wanted to hide to start conversations that might help somebody else.

My Scars Are Visible. Not All of My Wounds Are.

There's a phrase on a sticker I keep that says:

“Not all wounds are visible.”

That couldn't be more accurate.

You can see my surgical scars in these photographs.

What you can't see is everything that came with them.

And that's exactly why I'm sharing them.

Not for sympathy.

For awareness.

I want someone who has never heard of hydrocephalus to learn what it is.

I want another person with a shunt to see these photos and know they aren't the only person walking around with scars hidden beneath their hair.

I want people to understand that hydrocephalus doesn't disappear when someone leaves the hospital.

And I want patients to know that their experiences matter.

September 20 is also World Hydrocephalus Day, making this month an even bigger opportunity to get people talking about this condition.

So yes, you're going to hear me talk about hydrocephalus a lot this September.

You're going to see the scars.

You're going to hear the uncomfortable stories.

You're going to hear about the good days, the bad days, brain surgeries, shunts, recovery and everything in between.

Because this is what hydrocephalus looks like for me.