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.
As a teen or young adult with hydrocephalus, you'll reach exciting milestones where hydrocephalus may play a part in your decisions. Whether you're preparing to leave for college, starting your first job, or thinking about your future, hydrocephalus is just one aspect of your journey. With the right information and support, you can approach these moments with confidence and excitement. Explore the milestones detailed here to make sure you’re ready for each step with everything in place for a bright future ahead.
Transitioning from Pediatric to Adult Care
Adolescents transitioning to adulthood move from pediatric to adult healthcare systems, a crucial process known as healthcare transition. This shift involves adapting to new practitioners and settings, which can be challenging and complex. Planning for transition is vital.
High School
Starting high school is an exciting yet challenging milestone, especially for those living with hydrocephalus. Balancing academic and social pressures becomes more complex when managing health concerns. Coping with hydrocephalus adds an extra layer of complexity to daily life.
College Life
College is exciting, offering opportunities for personal growth and independence, but it can be challenging, especially for those with hydrocephalus. Besides adapting to college life, managing the condition is crucial. With proper planning, a successful and fun-filled college experience is possible.
Transitioning to Independence
Living well with hydrocephalus is no longer an impossible dream. Despite remaining challenges and associated conditions, it's now realistic to believe that young adults diagnosed early can lead fulfilling lives.
Top Resources
Our association offers trusted, high-quality resources to empower you.
HYDROCEPHALUS STORIES
from Our Community
Our community is brave, resilient, and inspiring. Read stories from individuals living 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).