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.
A Tool for Education and Conversation
Whether you were treated in childhood or diagnosed as an adult, hydrocephalus can be challenging to explain. My Hydro Bear offers a simple, approachable way to talk about your experience, whether you are sharing it with children, family, friends, or others in your community. It can also serve as a meaningful symbol of your journey.
Order My Hydro Bear for yourself or as a thoughtful gift for someone in your life. →
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 at 9 Months
Joseph
Story Written by Self
Joseph was diagnosed with hydrocephalus in infancy and continues to pursue his goals in education, work, and family life while navigating its challenges.
Diagnosed In-utero
Nancy
Story Written by Self
Nancy was born with hydrocephalus and spina bifida and continues to use her story to challenge stereotypes, raise awareness, and inspire others.
Diagnosed In-utero
Zoe
Story Written by Self
Zoe was diagnosed with congenital hydrocephalus in utero and uses her art, writing, and filmmaking to raise awareness and inspire others.
Diagnosed at 4 Months
Hilda-Ann
Story Written by Self
Hilda-Ann was diagnosed with hydrocephalus in infancy and has turned a life of challenges into a journey of resilience, advocacy, and purpose.
Diagnosed at 6 Weeks
Laura
Story Written by Self
Laura was diagnosed with hydrocephalus caused by Dandy-Walker syndrome and has turned lifelong challenges into resilience, advocacy, and hope.
Diagnosed In-utero
Syreniti
Story Written by Self
Syreniti was born with hydrocephalus and defied expectations, using her journey to fuel her passion for helping others.