Hydrocephalus Stories from Our Community

Read stories of people living with hydrocephalus (Patients and Caregivers). These amazing individuals are living life to the fullest regardless of the challenges the condition brings. Want to share your own story of resilience?

Diagnosed at 2 Months

Tyler

Story Written by Author/Self

By JennBechard January 29, 2021

I have learned that no matter what I’m going through, I can have a positive attitude and a determination to overcome any obstacle I meet.

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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.

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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.

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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!

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Diagnosed at 3 Weeks

Brianna

Story Written by Author/Self

By JennBechard January 29, 2021

Brianna grew up in and out of the hospital. That’s when she found her passion of becoming a pediatric nurse. Now she’s about to achieve her childhood dream.

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Diagnosed at Birth

Eric

Story Written by Author/Self

By JennBechard January 28, 2021

My perception of hydrocephalus has changed. I no longer view it as a limitation nor a difference to be scared of, but a unique quality that brings out my greatest strengths while nurturing my weaknesses.

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Lynn

Story Written by Author/Self

By JennBechard January 28, 2021

What happens if you wake up one morning to crippling headaches and learn that you’ve had hydrocephalus your whole life? That’s what happened to Lynn.

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Diagnosed at Birth

Michael

Story Written by Author/Self

By JennBechard January 28, 2021

“I use my #hydrocephalus fears to inspire me to live without regrets. So, I’ve done every WALK to End Hydrocephalus held in my hometown and intend to continue to raise money and awareness.”

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Diagnosed at 6

Lola

Story Written by Author/Self

By JennBechard January 28, 2021

Today I’m happy that the good days still outnumber the bad days. My hope is that in sharing a snippet of my journey with hydrocephalus, you are able to focus on the good days and not the bad days of your journey with this condition.

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Max

Story Written by Mother

By Ines Schlegel February 12, 2020

“Max is our inspiration for everything. As his parents, we couldn’t be prouder of him!”

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Diagnosed In-utero

In Memory Of Skylene

Story Written by Mother

By JennBechard September 3, 2019

“Skylene saved the lives of 5 individuals through organ donation. She was the most giving person. If she knew she gave this gift of life she would be so proud!” Read Skylene’s story, told by her mom.

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SYS - Ft image Mary Sullivan

Diagnosed at 23

Mary

Story Written by Author/Self

By Ines Schlegel June 17, 2019

I joined the Peace Corps and taught high school Math in Morocco and Kenya. My school in Kenya was at about 10,000 feet. I don’t know if the elevation attributed to the increase in symptoms or not, but within 6 months I experienced a variety of new symptoms.

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Diagnosed at 23

Tracy

Story Written by Author/Self

By Ines Schlegel September 27, 2018

We are not sure if I was born with hydrocephalus or when it actually developed, but my condition didn’t rear it’s ugly head until one morning when I was 23 years old that I woke up and drove to work.

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Rafael

Story Written by Author/Self

By Ines Schlegel August 23, 2018

Rafael is a PhD student in Learning, Design, and Technology. He is currently developing a narrative video game to discuss “hidden disabilities”, focusing on his own experience with hydrocephalus!

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Diagnosed at Birth

Abby

Story Written by Author/Self

By Ines Schlegel May 17, 2018

In sharing my story, I hope to empower and inspire you to smile through your trials, whether they be with hydrocephalus or any other challenges that you may face.

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Diagnosed In-utero

Cayden

Story Written by Mother

By Ines Schlegel May 11, 2018

Besides the Chiari 2 malformation, there was no sign of hydrocephalus. At 38 weeks, our beautiful baby boy Cayden was born.

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Diagnosed at 59

Deborah

Story Written by Author/Self

By Ines Schlegel May 1, 2018

Knowledge is power and I believe it’s better to be educated than to go into something blindly. Particularly, brain surgery!

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Diagnosed at 23

Gabrielle

Story Written by Author/Self

By Ines Schlegel March 22, 2018

My hydrocephalus has played a role in shaping me into the person I am today and has changed my outlook on life. “Always play the best game with the cards you’ve been handed.”

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Diagnosed at Birth

Alexsis

Story Written by Author/Self

By Ines Schlegel February 6, 2018

I was born 3 months early at just 28 weeks and I have had more brain surgery’s than birthday’s!

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Diagnosed at 7

Vincent

Story Written by Mother

By Ines Schlegel January 18, 2018

As Vincent recovered we scoured the internet looking for anything on Hydrocephalus. We had no idea so many people of all ages suffered from this condition!

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Diagnosed at Birth

Luna

Story Written by Mother

By Ines Schlegel January 18, 2018

Luna was born 7 weeks early and delivery went pretty well, and after 17 hours our baby girl was finally here!

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Diagnosed In-utero

Hiro

Story Written by Mother

By Ines Schlegel January 15, 2018

Hydrocephalus. I had never heard of the word and it sent me into a panic. The next day we named him Hiro, which means vast  in Japanese, we thought the name was very fitting!

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Diagnosed at 3 Months

Wylie

Story Written by Mother

By Ines Schlegel January 4, 2018

Family members and friends remained very confused about Wylie’s condition. It was from that point on that my husband and I would make it our mission to educate others on hydrocephalus.

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Diagnosed at 10 Months

Olivia

Story Written by Mother

By Ines Schlegel December 28, 2017

Olivia had Grade III intraventricular hemorrhages (IVH) – or brain bleeds – in both ventricles. Today she is a beautiful 7 year old who has the ability to open doors that will lead her over new horizons.

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