I have hydrocephalus

Abbi, young adult living with hydrocephalus

Diagnosed In-utero

Abbi

By Sierra Smith October 26, 2026

Abbi shares her journey with hydrocephalus, from early shunt surgeries and school challenges to college, gaming, and finding strength in her support system.

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Dernel, a young adult living with hydrocephalus

Diagnosed at 9 Months

Dernel

By Sierra Smith October 22, 2026

Dernel shares her journey with hydrocephalus, from childhood shunt surgery to finding community, pursuing her passions, and persevering through challenges. 

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Amanda

Diagnosed At Birth

Amanda

By Sierra Smith October 6, 2026

Amanda reflects on growing up with hydrocephalus, overcoming painful challenges, and finding confidence, purpose, and her voice.

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Angel, hydrocephalus

Diagnosed at Birth

Angel

By Sierra Smith October 6, 2026

Angel shares how living with hydrocephalus has shaped his resilience, communication, independence, and connection to his community.

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Joseph

Diagnosed at 9 months

Joseph

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.

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Nancy

Diagnosed In-utero

Nancy

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.

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Zoe, adult with congenital hydrocephalus

Diagnosed In-utero

Zoe

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

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

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

By Sierra Smith May 11, 2026

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

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Angel, an adult living with hydrocephalus

Diagnosed at 13

Angel

By Sierra Smith January 30, 2026

Angel was diagnosed with hydrocephalus after years without answers and has spent decades living fully, finding joy in family and grandchildren

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Kyle

Diagnosed at 6

Kyle

By Sierra Smith January 29, 2026

Kyle navigated hydrocephalus and constant surgeries while in medical school, transforming patient experience into a career in academic medicine.

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Sophia

Diagnosed At Birth

Sophia

By Sierra Smith November 12, 2025

Sophia was born with hydrocephalus and faced lifelong health challenges. Now a fitness coach and author, she inspires others to overcome and thrive.

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Gaelle

Diagnosed In-utero

Gaelle

By Sierra Smith October 31, 2025

Born with hydrocephalus, Gaelle has faced countless surgeries and setbacks, yet continues to inspire others through her strength and optimism.

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Scott

Diagnosed at 53

Scott

By Sierra Smith October 31, 2025

Scott’s journey with hydrocephalus is one of strength and perseverance—overcoming paralysis and finding purpose in helping others heal.

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Lindsay

Diagnosed In-utero

Lindsay

By Sierra Smith October 29, 2025

Lindsay was diagnosed with hydrocephalus before birth. After multiple surgeries and vision loss, she found purpose teaching students with visual impairments.

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Lilien

Diagnosed at 3 Months

Lilien

By Sierra Smith October 23, 2025

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.

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Callie

Diagnosed at 10

Callie

By Sierra Smith September 29, 2025

Callie refuses to let hydrocephalus or seizures stop her. This fall, she begins her journey toward a Theater Arts degree and her dream career.

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Wesley, Living with hydrocephalus

Diagnosed at 16

Wesley

By JennBechard September 24, 2025

Wesley’s hydrocephalus was discovered after football in high school. Now he’s living with hydrocephalus, teaching, and inspiring others with his story.

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Anna

Diagnosed At Birth

Anna

By Sierra Smith August 22, 2025

Anna, diagnosed with hydrocephalus at birth, endured 18 brain surgeries and challenges, yet thrives in her career, theater, and community leadership.

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