September is Hydrocephalus Awareness Month 💙

Every September, the hydrocephalus community comes together to shine a light on a condition that affects more than 1 million Americans of all ages—yet remains widely misunderstood. Hydrocephalus is a brain disorder caused by an abnormal buildup of cerebrospinal fluid (CSF) in the brain’s ventricles. This excess fluid puts pressure on the brain, which can lead to headaches, nausea, vision changes, memory loss, and, if left untreated, can be life-threatening.

Unlike many other conditions, there is no cure for hydrocephalus. The only treatment is brain surgery—most commonly the placement of a shunt or an endoscopic third ventriculostomy (ETV). For those of us living with a VP shunt, it means a lifetime of monitoring, possible revisions, and learning to advocate for ourselves when something doesn’t feel right.

Why Awareness Matters

Despite how common it is (1 in every 770 babies develop it annually), hydrocephalus is still often overlooked in research funding and public understanding. Many people have never heard of it until it directly touches their lives—or the life of someone they love. That’s why Hydrocephalus Awareness Month is so important.

By spreading awareness, we:

• Encourage earlier recognition of symptoms and proper treatment.

• Push for more research funding to find better treatments—and ultimately a cure.

• Support the incredible resilience of patients, caregivers, and families navigating life with hydrocephalus every day.

My Why

This month is especially personal to me because I live with hydrocephalus. It has meant brain surgeries, shunt revisions, setbacks, and a journey I never imagined—but also resilience, perspective, and a community of warriors who inspire me daily. Hydrocephalus Awareness Month isn’t just a campaign to me—it’s a reminder that our voices matter, and our stories deserve to be heard.

How You Can Help

You don’t have to live with hydrocephalus to make a difference. This September, you can:

• Educate yourself and others: Share facts and resources.

• Wear blue to show support.

• Engage on social media: Use hashtags like #HydrocephalusAwarenessMonth and #HAM2025 to join the conversation.

• Support the Hydrocephalus Association: Donations fund research and provide resources to families.

• Listen and uplift the stories of those living with it. Sometimes, the biggest impact is simply showing up with empathy.

💙 Hydrocephalus may be rare in conversation, but it’s not rare in reality. This September, let’s work together to make sure more people know the word, the condition, and the faces behind it.

For more information, please visit the Hydrocephalus Association.