Hydrocephalus Stories from Our Community

Read stories of people living with hydrocephalus. These amazing individuals are living life to the fullest regardless of the challenges their condition brings. Want to share your own story of resilience?  Learn More

Morgan, 36

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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Elis, 28

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, 46

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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Samantha, 23

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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Danielle, 29

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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Zoe, 6 Months Old

Zoe is not even a year old but has already endured 13 surgeries due to hydrocephalus. Despite her challenges, she continues to amaze everyone with her smiles and joy.

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Jacob, 37

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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Jack, 2

At almost 2 years old, Jack has already endured nine brain surgeries to treat his hydrocephalus. But his parents have no doubt that their little “fighter” will continue to amaze them and make them stronger in the process.

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Isaac, 3

When Isaac developed hydrocephalus, his parents were told that he would have severe disabilities his entire life. Now, the spunky 3-year-old is defying the odds – running, laughing, dancing, speaking two languages and more!

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Wali, 23

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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Tyler, 36

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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James, 36

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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Brenna, 39

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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Danielle, 21

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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Brianna, 23

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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Marcos, 24

Growing up Marcos faced multiple surgeries and long hospital stays due to his hydrocephalus. But he has overcome it all with remarkable resilience and the countless nights in the hospital helped him find his mission in life!

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Eric, 23

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, 54

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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Michael, 27

“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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Lola, 30

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, 3

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

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In Memory Of Skylene, 10

“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

Mary, 57

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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Tracy, 38

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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