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 4 months
Camden
Story Written by Grandmother
Camden was diagnosed with hydrocephalus in infancy and had multiple brain surgeries before age two, yet his joy, strength, and love shine bright.
Diagnosed at 13
Angel
Story Written by Self
Angel was diagnosed with hydrocephalus after years without answers and has spent decades living fully, finding joy in family and grandchildren
Diagnosed In-utero
Ethan
Story Written by Father
Ethan was diagnosed with hydrocephalus before birth and grew at his own pace—meeting every milestone with joy, determination, and a smile.
Diagnosed at 6
Kyle
Story Written by Self
Kyle navigated hydrocephalus and constant surgeries while in medical school, transforming patient experience into a career in academic medicine.
Diagnosed at 11 Months
Allison
Story Written by Mother
Allison was diagnosed with hydrocephalus at 11 months. After multiple surgeries and therapy, she’s now 6, thriving, strong, and full of courage.
Diagnosed At Birth
Sophia
Story Written by Self
Sophia was born with hydrocephalus and faced lifelong health challenges. Now a fitness coach and author, she inspires others to overcome and thrive.
Diagnosed at 3 Months
Colton
Story Written by Mother
Colton was a preemie diagnosed with hydrocephalus and a tough start. At 4, he’s thriving, playing, and full of joy.
Diagnosed at 63
Tina
Story Written by Husband
Tina was diagnosed with NPH after months of unexplained changes and declining mobility. Now, her husband shares their ongoing journey of care and hope.
Diagnosed In-utero
Gaelle
Story Written by Self
Born with hydrocephalus, Gaelle has faced countless surgeries and setbacks, yet continues to inspire others through her strength and optimism.
Diagnosed at 53
Scott
Story Written by Self
Scott’s journey with hydrocephalus is one of strength and perseverance—overcoming paralysis and finding purpose in helping others heal.
Diagnosed In-utero
Lindsay
Story Written by Self
Lindsay was diagnosed with hydrocephalus before birth. After multiple surgeries and vision loss, she found purpose teaching students with visual impairments.
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.