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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.
Amanda
Story Written by Self
Amanda reflects on growing up with hydrocephalus, overcoming painful challenges, and finding confidence, purpose, and her voice.
Diagnosed at Birth
Angel
Story Written by Self
Angel shares how living with hydrocephalus has shaped his resilience, communication, independence, and connection to his community.
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.