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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.
A Tool for Learning and Sharing Your Story
Growing up with hydrocephalus can come with questions, changes, and moments when you have to explain your condition to others. My Hydro Bear can help make those conversations easier. Because the bear has a shunt, it offers a simple visual that can help you talk about your experience with friends, classmates, siblings, and even during medical appointments. It can also be a meaningful reminder of your strength and journey.
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 At Birth
Sophia
Story Written by Self
Sophia was born with hydrocephalus and faced lifelong health challenges. Now a fitness coach and author, she inspires others to overcome and thrive.
Diagnosed In-utero
Gaelle
Story Written by Self
Born with hydrocephalus, Gaelle has faced countless surgeries and setbacks, yet continues to inspire others through her strength and optimism.
Diagnosed at 53
Scott
Story Written by Self
Scott’s journey with hydrocephalus is one of strength and perseverance—overcoming paralysis and finding purpose in helping others heal.
Diagnosed In-utero
Lindsay
Story Written by Self
Lindsay was diagnosed with hydrocephalus before birth. After multiple surgeries and vision loss, she found purpose teaching students with visual impairments.
Diagnosed at 3 Months
Lilien
Story Written by Self
Lilien was diagnosed with hydrocephalus at 3 months old and has undergone 11 surgeries. Now 21, she’s thriving in her third year of medical school in Austria.
Diagnosed at 10
Callie
Story Written by Self
Callie refuses to let hydrocephalus or seizures stop her. This fall, she begins her journey toward a Theater Arts degree and her dream career.