I have hydrocephalus

Ayana SYS 1 2

Diagnosed at 12

Ayana

Story Written by Self

By Sierra Smith March 20, 2025

Ayana was diagnosed with hydrocephalus at age 12.Through 15 brain surgeries, she found strength, hope, and purpose.

Read More...
Bill SYS 1

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.

Read More...
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.

Read More...
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.

Read More...
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.

Read More...
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.

Read More...
James featured image

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.

Read More...
Kyleigh 16 in Snow EDITED

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).

Read More...
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!

Read More...
Morgan, adult with hydrocephalus

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.

Read More...
Share your Story Featured Image Elis

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!

Read More...
Share your Story Featured Image Cathy R

Diagnosed at 42

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.

Read More...
Share your Story Featured Image Samantha

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.

Read More...
Share your Story Featured Image Danielle Smith 1

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.

Read More...
Share your Story Featured Image Jacob

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.

Read More...
Wali featured image

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.

Read More...
Share your Story Featured Image Tyler

Diagnosed at 2 Months

Tyler

Story Written by Author/Self

By JennBechard January 29, 2021

Tyler was diagnosed with hydrocephalus as a baby. Despite the many challenges he’s faced, his faith and music help him maintain a positive attitude.

Read More...
Share your Story Featured Image James

Diagnosed at Birth

James

Story Written by Author/Self

By JennBechard January 29, 2021

James has always been fearless. He never let his hydrocephalus stop him from climbing mountains or volunteering to build houses in Cambodia. Even after a physical set back, he’s determined to continue living life and giving back.

Read More...
Share your Story Featured Image Brenna

Diagnosed at 33

Brenna

Story Written by Author/Self

By JennBechard January 29, 2021

Brenna’s life was turned upside down after she developed hydrocephalus six years ago. But after undergoing brain surgery for a shunt, she refused to let her condition stop her from enjoying the outdoor adventures she always loved.

Read More...
Danielle, adult with hydrocephalus

Diagnosed at 7

Danielle

Story Written by Author/Self

By JennBechard January 29, 2021

I was diagnosed with hydrocephalus at the age of 7 years old and had my first shunt on August 14, 2007. Doctors told me I was going to live with a shunt for the rest of my life but Aug. 20th 2020 is the 10th anniversary of being shunt free!

Read More...