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
Rylie
Story Written by Mother
Rylie is a bright and bubbly 3-year-old who loves to laugh and play.
Diagnosed In-utero
Meryl
Story Written by Father
She is an incredibly smart, active two-year-old with a great sense of humor.
Diagnosed at 6 Months
Amanda
Story Written by Author/Self
I am so blessed to have such a diagnosis. It makes me appreciate the good days, and makes me realize how valuable and precious health truly is.
Diagnosed at 1
Davison
Story Written by Author/Self
From that last surgery at the age of eight, I have been in great health.
Diagnosed at 39
Christine
Story Written by Author/Self
I view the challenges I have faced as an avenue for opportunity.
Diagnosed at 12
Sandy
Story Written by Author/Self
Congenital hydrocephalus
Receptionist/Secretary
Sandy was diagnosed with hydrocephalus when she was 12, but not treated until she was 18. She is in the group of first generation hydrocephalus survivors!
Diagnosed at 4 Months
Layla
Story Written by Mother
Layla was born with an Occipital Encephalocele which caused her hydrocephalus. She’s a happy toddler, hitting her milestones and bringing joy to her family after a successful shunt placement.
Diagnosed at Birth
Edgar
Story Written by Author/Self
Edgar was diagnosed with communicating hydrocephalus as a child.
Diagnosed at Birth
Brianna
Story Written by Author/Self
Brianna was born with hydrocephalus and Dandy Walker Syndrome. With aspirations to become a doctor, Brianna refuses to let hydrocephalus run her life.
Diagnosed In-utero
Cohen
Story Written by Mother
Cohen was born with hydrocephalus and later diagnosed with a rare, sporadic cerebellar malformation called rhombencephalosynapsis associated with Gomez-Lopez-Hernandez Syndrome. But it does not stop him from being every bit of wonderful!
Diagnosed at Birth
Robert
Story Written by Author/Self
Robert was diagnosed with hydrocephalus at two weeks of age.
Diagnosed at Birth
Travis
Story Written by Author/Self
Travis acquired hydrocephalus at birth from a brain bleed.
Diagnosed at 18 Months Old
Oliver
Story Written by Mother
Oliver acquired hydrocephalus from a brain tumor when he was 18 months old. He doesn’t let any of this slow him down. He loves going to preschool and playing with his little sister, Kate.
Diagnosed at age 18
Melinda
Story Written by Author/Self
Melinda was diagnosed with congenital hydrocephalus at the age of 18. In the summer of 2013, her symptoms escalated to having migraines every day, urinary incontinence, vomiting, and severe neck pain.
Diagnosed at Birth
Jessie
Story Written by Author/Self
Jessie acquired hydrocephalus from a brain bleed and she has decided to share her story in the hopes that by talking, we can end the negative stigma around differently-abled people.
Diagnosed at Birth
Lars
Story Written by Mother
Congenital hydrocephalus from a brain bleed
Lars spent 114 days in the NICU and went through 6 surgeries while there.
Merlin
Story Written by Author/Self
Merlin was diagnosed with normal pressure hydrocephalus (NPH). She is a retired international flight attendant.
Brianna
Story Written by Mother
Brianna acquired hydrocephalus from a brain injury from being shaken as a child. She is the greatest gift her family could ever ask for. They consider themselves the very proud parents of a survivor who wants to and will change the world.
Diagnosed at 18 Months
Danielle
Story Written by Author/Self
Danielle was diagnosed with hydrocephalus at 18 months old.
Diagnosed at Birth
Diane
Story Written by Author/Self
Diane was born with hydrocephalus. She is now a 5th grade teacher.
Diagnosed at Birth
Matthew
Story Written by Author/Self
Matthew acquired hydrocephalus from a brain bleed. Currently, he is a security officer and he is married with 5 kids. He is working and accomplishing things that doctors thought would not be possible.
Diagnosed at 9 Months
Emma
Story Written by Mother
Emma was diagnosed with hydrocephalus at 9 months old and has undergone six shunt revisions since her shunt placement.
Diagnosed at 6 Weeks
Greg
Story Written by Author/Self
Greg has congenital hydrocephalus and is a manager at a bank. Hydrocephalus is part of who he is and it changes the way he does certain things, but he does not let the condition define who he is as a person.
Diagnosed at Birth
Carly
Story Written by Author/Self
Carly acquired hydrocephalus from a brain bleed. She says that shunts quit; she doesn’t!