Know You're Not Alone
We are here to help you live your best life.
Find essential tools and resources to help you advocate for yourself, make informed decisions, and manage your daily needs.
Hydrocephalus can impact your life in various ways, but the extent of that impact can differ. While it may present medical, financial, and social challenges, understanding how to manage the condition can help you maintain independence and control. By staying informed about ongoing care, you'll feel empowered to make confident decisions about your health and lifestyle, opening up possibilities for a fulfilling life.
Managing Day-to-Day Challenges
Living with a chronic neurological condition like hydrocephalus can bring daily challenges that may feel overwhelming. The invisibility of its symptoms can contribute to feelings of isolation. But there's hope! We're here to support, guide, and provide trusted resources, helping you live your best life.
Navigating Your Care
Once you receive a hydrocephalus diagnosis, choosing your doctor is one of the most important decisions you will make. We have developed resources to help you explore the diverse range of specialists who cater to individuals with hydrocephalus, along with tips to aid in finding the best fit for your needs.
Related Health Conditions
It's not uncommon for individuals with hydrocephalus to experience additional symptoms or comorbidities, whether predating the diagnosis or emerging later on. Many people have to manage additional health issues such as headaches, chronic pain, and epilepsy, among others.
Healthy Living
Staying healthy, from the inside out, is key to maintaining a good quality of life when living with hydrocephalus. Discover insights and strategies to optimize both your physical and mental well-being, empowering you to lead your best life possible.
Top Resources
Our association offers trusted, high-quality resources to empower you.
Hydrocephalus Stories
from Individuals in Our Community
Our community is brave, resilient, and inspiring. Read stories from individuals with hydrocephalus.
Diagnosed In-utero
Dereck
Story Written by Self
Dereck’s journey with hydrocephalus has made him resilient, navigating over 500 surgeries and countless challenges. Despite unexpected turns, he finds fulfillment in volunteering and inspiring hope in others.
Diagnosed at 2 weeks
Fred
Story Written by Self
Despite the countless challenges of living with hydrocephalus, Fred has found resilience through self-advocacy, community connection, and a passion for supporting others facing similar journeys.
Diagnosed at 24
Lauren
Story Written by Self
After years of misdiagnoses, Lauren was finally diagnosed with hydrocephalus in 2021 and underwent successful endoscopic third ventriculostomy (ETV) surgery.
Diagnosed at 21
Ryan
Story Written by Self
After a benign brain tumor diagnosis amid the COVID-19 pandemic, Ryan faced an even greater challenge when a subsequent injury unveiled hydrocephalus. His emergency surgery marked a turning point, empowering him to pursue a fulfilling life despite the obstacles.
Diagnosed at 7 Months
James
Story Written by Author/Self
James recounts his journey navigating academic success and personal growth while living with hydrocephalus. His story underscores resilience and the call for improved support.
Diagnosed at 10 Months
Kyleigh
Story Written by Author/Self
At the age of 10 months, Kyleigh was diagnosed with obstructive hydrocephalus, also known as non-communicating hydrocephalus. She developed hydrocephalus from a tectal glioma (brain tumor).