Resources

For Teens and Young Adults
Living with Hydrocephalus

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

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

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 (2)

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 Independece

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.

Order My Hydro Bear for yourself or as a gift for another teen or young adult living with hydrocephalus. →

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HYDROCEPHALUS STORIES

from Our Community

Our community is brave, resilient, and inspiring. Read stories from individuals living with hydrocephalus.

Joseph

Diagnosed at 9 Months

Joseph

Story Written by Self

By Sierra Smith September 2, 2026

Joseph was diagnosed with hydrocephalus in infancy and continues to pursue his goals in education, work, and family life while navigating its challenges.

Read More...
Nancy

Diagnosed In-utero

Nancy

Story Written by Self

By Sierra Smith September 1, 2026

Nancy was born with hydrocephalus and spina bifida and continues to use her story to challenge stereotypes, raise awareness, and inspire others.

Read More...
Zoe, adult with congenital hydrocephalus

Diagnosed In-utero

Zoe

Story Written by Self

By Sierra Smith August 28, 2026

Zoe was diagnosed with congenital hydrocephalus in utero and uses her art, writing, and filmmaking to raise awareness and inspire others.

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Hilda-Ann, adult with hydrocephalus

Diagnosed at 4 Months

Hilda-Ann

Story Written by Self

By Sierra Smith August 27, 2026

Hilda-Ann was diagnosed with hydrocephalus in infancy and has turned a life of challenges into a journey of resilience, advocacy, and purpose.

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Laura, adult with hydrocephalus

Diagnosed at 6 Weeks

Laura

Story Written by Self

By Sierra Smith August 4, 2026

Laura was diagnosed with hydrocephalus caused by Dandy-Walker syndrome and has turned lifelong challenges into resilience, advocacy, and hope.

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Syreniti

Diagnosed In-utero

Syreniti

Story Written by Self

By Sierra Smith May 11, 2026

Syreniti was born with hydrocephalus and defied expectations, using her journey to fuel her passion for helping others.

Read More...

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