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 77
Dorothy
Story Written by Author/Self
Dorothy’s goal is to help others find an accurate NPH diagnosis and treatment to avoid what she, and so many, have experienced.
Morgan
Story Written by Author/Self
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.
Diagnosed at 6 Weeks
Elis
Story Written by Author/Self
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!
Diagnosed at 42
Cathy
Story Written by Author/Self
Cathy had always experienced headaches. But in 2018 a laughing fit sent her to the emergency room, where she learned she had hydrocephalus.
Diagnosed at Birth
Samantha
Story Written by Author/Self
Samantha lived her entire life with a shunt to treat her hydrocephalus until an emergency trip to the hospital at age 22 changed everything.
Diagnosed at 23
Danielle
Story Written by Author/Self
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.
Diagnosed at Birth
Zoe
Story Written by Father
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.
Diagnosed at Birth
Jacob
Story Written by Author/Self
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.
Diagnosed at 1 Month
Jack
Story Written by Mother
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.
Diagnosed In-utero
Isaac
Story Written by Mother
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!
Diagnosed at 8 Months
Wali
Story Written by Author/Self
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.
Diagnosed at 2 Months
Tyler
Story Written by Author/Self
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.
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.
Diagnosed In-utero
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.