Our Hydrocephalus Stories
Diagnosed at 7 Months
James
Story Written by Author/Self
James recounts his journey navigating academic success and personal growth while living with hydrocephalus. His story underscores resilience and the call for improved support.
Diagnosed at 67
Evelyn
Story Written by Author/Self
Evelyn shares how the surgical placement of a shunt for NPH transformed her life.
Diagnosed at 75
John
Story Written by Wife
Sukey shares her husband’s journey with normal pressure hydrocephalus (NPH).
Diagnosed at 10 Months
Kyleigh
Story Written by Author/Self
At the age of 10 months, Kyleigh was diagnosed with obstructive hydrocephalus, also known as non-communicating hydrocephalus. She developed hydrocephalus from a tectal glioma (brain tumor).
Diagnosed at 3 Days
Marcos
Story Written by Author/Self
Marcos acquired hydrocephalus at 3 days old due to a brain bleed. Growing up with hydrocephalus, he faced multiple surgeries and hospital stays. But those challenges led him to his life mission!
Diagnosed at 79
Mira
Story Written by Author/Self
Mira was diagnosed with NPH at the age of 79. She believes in early detection of hydrocephalus.
Diagnosed at 62
Kim
Story Written by Author/Self
Kim was diagnosed with normal pressure hydrocephalus (NPH) at the age of 62.
Diagnosed at 66
Trish
Story Written by Author/Self
Trish was diagnosed with NPH and had shunt surgery. Thanks to that and several kinds of therapy, Trish is now back to doing what she loves.
Diagnosed at 34
Gary
Story Written by Author/Self
Gary has been living with NPH for over 40 years. He hopes the information he offers is helpful to someone that is just learning about the condition.
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.
Diagnosed at 16
Wesley
Story Written by Author/Self
In high school, football player Wesley got some shocking news. He was diagnosed with hydrocephalus and told to stop playing football. However, he didn’t let that stop him from living life to the fullest. Today, he’s an elementary and middle school teacher and an advocate for the condition.
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!
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!