I have hydrocephalus

Diagnosed In-utero

Marcio

Story Written by Self

By Sierra Smith April 4, 2025

From overcoming medical hurdles in Brazil to pursuing a degree in medicine, Marcio’s hydrocephalus journey is one of resilience, perseverance, and hope.

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Diagnosed at 8

Janay

Story Written by Self

By Sierra Smith April 3, 2025

Diagnosed at 8, Janay has endured 200+ shunt revisions. Now, she’s advocating, supporting others, and refusing to let hydrocephalus define her.

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Diagnosed at 4 months

Sarah

Story Written by Self

By Sierra Smith March 26, 2025

Diagnosed with hydrocephalus at four months old, Sarah has faced surgeries and challenges. Now a mother, she embraces each day with strength and purpose.

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Diagnosed at 12

Ayana

Story Written by Self

By Sierra Smith March 20, 2025

Despite enduring 15 brain surgeries and life-threatening complications, Ayana shares her story to inspire hope and strength in others on the hydrocephalus journey.

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Diagnosed at 4 months

Bill

Story Written by Self

By Sierra Smith February 11, 2025

Born in the late 1960s, Bill faced early challenges with hydrocephalus but went on to earn a master’s degree, teach, and become a parent, grateful for his stability while recognizing every journey is unique.

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Dereck, hydrocephalus journey

Diagnosed In-utero

Dereck

Story Written by Self

By Sierra Smith January 3, 2025

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.

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Fred

Diagnosed at 2 weeks

Fred

Story Written by Self

By Sierra Smith November 26, 2024

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.

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Lauren

Diagnosed at 24

Lauren

Story Written by Self

By admin September 3, 2024

After years of misdiagnoses, Lauren was finally diagnosed with hydrocephalus in 2021 and underwent successful endoscopic third ventriculostomy (ETV) surgery.

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Ryan

Diagnosed at 21

Ryan

Story Written by Self

By JennBechard May 20, 2024

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.

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Diagnosed at 7 Months

James

Story Written by Author/Self

By JennBechard September 12, 2023

James recounts his journey navigating academic success and personal growth while living with hydrocephalus. His story underscores resilience and the call for improved support.

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Diagnosed at 10 Months

Kyleigh

Story Written by Author/Self

By JennBechard May 15, 2023

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).

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Marcos

Diagnosed at 3 Days

Marcos

Story Written by Author/Self

By JennBechard May 2, 2023

Marcos acquired hydrocephalus at 3 days old due to a brain bleed. Growing up with hydrocephalus, he faced multiple surgeries and hospital stays. But those challenges led him to his life mission!

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Diagnosed at 16

Wesley

Story Written by Author/Self

By JennBechard March 17, 2022

In high school, football player Wesley got some shocking news. He was diagnosed with hydrocephalus and told to stop playing football. However, he didn’t let that stop him from living life to the fullest. Today, he’s an elementary and middle school teacher and an advocate for the condition.

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Morgan

Story Written by Author/Self

By JennBechard April 27, 2021

Morgan struggled for years with debilitating symptoms that no one could explain until finally being diagnosed with hydrocephalus. Now, her struggle continues to get better even after her shunt placement but she refuses to give up hope.

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Diagnosed at 6 Weeks

Elis

Story Written by Author/Self

By JennBechard January 29, 2021

Despite the headaches, vertigo and learning challenges caused by her hydrocephalus, Elis is studying to pursue her dream of becoming a lawyer and loves trying new adventures!

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Cathy

Story Written by Author/Self

By JennBechard January 29, 2021

Cathy had always experienced headaches. But in 2018 a laughing fit sent her to the emergency room, where she learned she had hydrocephalus.

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Diagnosed at Birth

Samantha

Story Written by Author/Self

By JennBechard January 29, 2021

Samantha lived her entire life with a shunt to treat her hydrocephalus until an emergency trip to the hospital at age 22 changed everything.

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Diagnosed at 23

Danielle

Story Written by Author/Self

By JennBechard January 29, 2021

Danielle spent years with debilitating symptoms that caused her to struggle in school and life. Eventually as an adult, she was treated for hydrocephalus and it changed her life.

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Diagnosed at Birth

Jacob

Story Written by Author/Self

By JennBechard January 29, 2021

Jacob grew up with learning disabilities due to his hydrocephalus. However, he eventually figured out a way to turn his challenges into a gift for himself and others as a tool for memory retrieval and later behavior management, life skills and so much more.

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Diagnosed at 8 Months

Wali

Story Written by Author/Self

By JennBechard January 29, 2021

Wali was in and out of the hospital frequently as a child due to his hydrocephalus, and then again when he was older. But that didn’t stop him from pushing hard in school. Today, he’s doing what he loves to do and is the proud owner of an IT company.

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