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 3 Months
Lilien
Story Written by Self
Lilien was diagnosed with hydrocephalus at 3 months old and has undergone 11 surgeries. Now 21, she’s thriving in her third year of medical school in Austria.
Diagnosed at 10
Callie
Story Written by Self
Callie refuses to let hydrocephalus or seizures stop her. This fall, she begins her journey toward a Theater Arts degree and her dream career.
Diagnosed at 75
John
Story Written by Wife
John was diagnosed with normal pressure hydrocephalus (NPH) at the age of 75. Sukey, John’s wife, shares his journey.
Diagnosed at 16
Wesley
Story Written by Author/Self
Wesley’s hydrocephalus was discovered after football in high school. Now he’s living with hydrocephalus, teaching, and inspiring others with his story.
Diagnosed at 64
Barkley
Story Written by Self
Barkley’s story reflects perseverance, navigating life with normal pressure hydrocephalus, shunt surgeries, and setbacks with courage and hope.
Diagnosed At Birth
Anna
Story Written by Self
Anna, diagnosed with hydrocephalus at birth, endured 18 brain surgeries and challenges, yet thrives in her career, theater, and community leadership.
Diagnosed at 73
Carol
Story Written by Self
Carol shares her journey with normal pressure hydrocephalus, from sudden memory loss to regaining independence after life-changing shunt surgery.
Diagnosed at 18
Courtney
Story Written by Self
Courtney shares her journey with acquired hydrocephalus after a TBI, inspiring hope and raising awareness for this lifelong condition.
Diagnosed at 75
Karen
Story Written by Self
Karen went from struggling to walk to living well with NPH after shunt surgery—and now she’s advocating to raise awareness of hydrocephalus.
Diagnosed at 2
Hunter
Story Written by Mother
Hunter was 2 when his parents’ persistence led to his hydrocephalus diagnosis—after months of being told nothing was wrong.
Diagnosed At Birth
Kunle
Story Written by Self
Kunle was born with hydrocephalus in Nigeria. Despite barriers to care and years of hardship, he found his voice as a writer, advocate, and changemaker.
Diagnosed at 4
Ryan
Story Written by Self
Ryan lived most of his life unaware he had hydrocephalus. After years of misdiagnoses, one neurosurgeon’s insight saved his life and changed his story.
Diagnosed at 2
Delrina
Story Written by Self
Delrina was diagnosed with hydrocephalus at age 2. Despite multiple surgeries and daily headaches, she’s grown into a leader, advocate, and lifelong learner.
Diagnosed In-utero
In Memory of Maryam
Story Written by Mother
In memory of Maryam, diagnosed with hydrocephalus before birth, Maryam’s journey highlights the critical care gaps faced by families across Africa.
Diagnosed at 8 Months
Margie
Story Written by Self
Diagnosed with hydrocephalus at 8 months, Margie defied the odds. Now 32, she climbs mountains, hosts a podcast, and proves she’s more than able.
Diagnosed At Birth
Alia
Story Written by Self
Alia, born with hydrocephalus, endured years of complex surgeries. With faith and family by her side, she’s overcome the odds and continues to inspire.
Diagnosed In-utero
Hannah
Story Written by Mother
Hannah, a twin diagnosed with hydrocephalus before birth, is defying the odds. After surgeries and setbacks, she’s now thriving in everyday life.
Diagnosed In-utero
Jessica
Story Written by Self
Diagnosed with congenital hydrocephalus before birth, Jessica has had over 150 surgeries, but found strength and purpose through volunteering and advocacy.
Diagnosed at 70
Harry
Story Written by Self
Misdiagnosed with Parkinson’s, Harry fought for the right diagnosis—NPH. Now, he’s rebuilding his life with therapy, community, and renewed independence.
Diagnosed In-utero
Marcio
Story Written by Self
From overcoming medical hurdles in Brazil to pursuing a degree in medicine, Marcio’s hydrocephalus journey is one of resilience, perseverance, and hope.
Diagnosed at 8
Janay
Story Written by Self
Diagnosed at 8, Janay has endured 200+ shunt revisions. Now, she’s advocating, supporting others, and refusing to let hydrocephalus define her.
Diagnosed at 16 days
Colton
Story Written by Mother
Born premature, Colton faced hydrocephalus and multiple shunt surgeries. Now, at almost three, he’s thriving and two years shunt failure-free!
Diagnosed at 4 months
Sarah
Story Written by Self
Sarah was diagnosed with hydrocephalus at four months, facing surgeries and challenges. Now a mother, she lives each day with strength and purpose.
Diagnosed at 12
Ayana
Story Written by Self
Ayana was diagnosed with hydrocephalus at age 12.Through 15 brain surgeries, she found strength, hope, and purpose.