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
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.
Diagnosed at Birth
James
Story Written by Author/Self
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.
Diagnosed at 33
Brenna
Story Written by Author/Self
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.
Diagnosed at 7
Danielle
Story Written by Author/Self
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!
Diagnosed at 3 Weeks
Brianna
Story Written by Author/Self
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.
Diagnosed at Birth
Eric
Story Written by Author/Self
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.
Lynn
Story Written by Author/Self
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.
Diagnosed at Birth
Michael
Story Written by Author/Self
“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.”
Diagnosed at 6
Lola
Story Written by Author/Self
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.
Max
Story Written by Mother
“Max is our inspiration for everything. As his parents, we couldn’t be prouder of him!”
Diagnosed In-utero
In Memory Of Skylene
Story Written by Mother
“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.
Diagnosed at 23
Mary
Story Written by Author/Self
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.
Diagnosed at 23
Tracy
Story Written by Author/Self
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.
Rafael
Story Written by Author/Self
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!
Diagnosed at Birth
Abby
Story Written by Author/Self
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.
Diagnosed In-utero
Cayden
Story Written by Mother
Besides the Chiari 2 malformation, there was no sign of hydrocephalus. At 38 weeks, our beautiful baby boy Cayden was born.
Diagnosed at 59
Deborah
Story Written by Author/Self
Knowledge is power and I believe it’s better to be educated than to go into something blindly. Particularly, brain surgery!
Diagnosed at 23
Gabrielle
Story Written by Author/Self
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.”
Diagnosed at Birth
Alexsis
Story Written by Author/Self
I was born 3 months early at just 28 weeks and I have had more brain surgery’s than birthday’s!
Diagnosed at 7
Vincent
Story Written by Mother
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!
Diagnosed at Birth
Luna
Story Written by Mother
Luna was born 7 weeks early and delivery went pretty well, and after 17 hours our baby girl was finally here!
Diagnosed In-utero
Hiro
Story Written by Mother
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!
Diagnosed at 3 Months
Wylie
Story Written by Mother
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.
Diagnosed at 10 Months
Olivia
Story Written by Mother
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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