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 70
Diane
Story Written by Self
At 70 years old, Diane was diagnosed with NPH after struggles with falls and incontinence. Following ventriculoperitoneal (VP) shunt surgery, she has made steady progress, moving from a walker to a cane, supported by her husband Alan and family as she embraces life’s challenges and small victories.
Diagnosed In-utero
Dereck
Story Written by Self
Dereck’s journey with hydrocephalus has made him resilient, navigating over 500 surgeries and countless challenges. Despite unexpected turns, he finds fulfillment in volunteering and inspiring hope in others.
Diagnosed at 2 weeks
Fred
Story Written by Self
Despite the countless challenges of living with hydrocephalus, Fred has found resilience through self-advocacy, community connection, and a passion for supporting others facing similar journeys.
Diagnosed In-utero
Ryder
Story Written by Mother
Ryder, an 11-year-old living with spina bifida and hydrocephalus, has faced countless challenges, yet his resilience inspires his family every day.
Cavan, Breccan, and Teagan
Story Written by Mother
Caitlin shares her family’s unique journey of having three children diagnosed with hydrocephalus, beginning with her oldest son, Cavan. Despite being told the condition wasn’t genetic, both of her younger children, Breccan and Teagan, were also diagnosed with hydrocephalus.
Diagnosed at 8 Months
Oliver
Story Written by Father
It has now been almost 4 months since Oliver had his shunt placed, and he is living life to the fullest!
Diagnosed at 5 Months
Cadogan
Story Written by Father
Cadogan, born with hydrocephalus, has faced multiple surgeries and challenges, but continues to show resilience and progress with the strong support of his family.
Diagnosed at 24
Lauren
Story Written by Self
After years of misdiagnoses, Lauren was finally diagnosed with hydrocephalus in 2021 and underwent successful endoscopic third ventriculostomy (ETV) surgery.
Diagnosed at 1 Month
Benaiah
Story Written by Mother
Nineteen. That’s how many days Benaiah’s family had with him before realizing how much he was up against. Benaiah’s story is hard, but it’s a good one, filled with hope and strength.
Diagnosed at 21
Ryan
Story Written by Self
After a benign brain tumor diagnosis amid the COVID-19 pandemic, Ryan faced an even greater challenge when a subsequent injury unveiled hydrocephalus. His emergency surgery marked a turning point, empowering him to pursue a fulfilling life despite the obstacles.
Diagnosed at 62
Olga
Story Written by Self
Olga confronted unexpected health hurdles at 62. From navigating unexplained falls to advocating for her treatment, her story embodies resilience.
Diagnosed In-utero
In Memory of Our Miracle Carla
Story Written by Parent and Sister
Carla’s journey began with a revelation that resonated with uncertainty. Carla was diagnosed with congenital…
Diagnosed at Birth
Tyerria
Story Written by Mother
“Our miracle baby is now a young woman who has been truly blessed and remains steadfast.” Read Tyerria’s story, told by her mom, Terra.
Diagnosed at Birth
Cecilia
Story Written by Mother
Kristen shares Cecilia’s inspiring journey, born at 29 weeks, a testament to resilience and the human spirit’s triumph.
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.