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 9 Months
Joseph
Story Written by Self
Joseph was diagnosed with hydrocephalus in infancy and continues to pursue his goals in education, work, and family life while navigating its challenges.
Diagnosed In-utero
Nancy
Story Written by Self
Nancy was born with hydrocephalus and spina bifida and continues to use her story to challenge stereotypes, raise awareness, and inspire others.
Diagnosed In-utero
Myles
Story Written by Mother
Myles was diagnosed with hydrocephalus before birth and spent 44 days in the NICU. After seven surgeries, he is now thriving, running, and inspiring his family.
Diagnosed at 1 Month
Jaylani
Story Written by Mother
Jaylani’s mother shares her daughter’s congenital hydrocephalus journey, from diagnosis at one month old to successful ETV surgery and a thriving recovery.
Diagnosed In-utero
Victoria
Story Written by Mother
Victoria was diagnosed with hydrocephalus before birth due to aqueductal stenosis and continues to thrive through every challenge.
Diagnosed In-utero
Zoe
Story Written by Self
Zoe was diagnosed with congenital hydrocephalus in utero and uses her art, writing, and filmmaking to raise awareness and inspire others.
Diagnosed at 4 Months
Hilda-Ann
Story Written by Self
Hilda-Ann was diagnosed with hydrocephalus in infancy and has turned a life of challenges into a journey of resilience, advocacy, and purpose.
Diagnosed at 5 Months
Layla
Story Written by Mother
Layla was diagnosed with hydrocephalus after a brain bleed. Through surgeries and challenges, she continues to thrive with resilience.
Diagnosed at 6 Weeks
Laura
Story Written by Self
Laura was diagnosed with hydrocephalus caused by Dandy-Walker syndrome and has turned lifelong challenges into resilience, advocacy, and hope.
Diagnosed at 64
In Memory of Susanne
Story Written by Husband
Susanne was a lifelong nurse who lived with MS and hydrocephalus, and whose life reflected strength, resilience, and dedication to caring for others.
Diagnosed In-utero
Syreniti
Story Written by Self
Syreniti was born with hydrocephalus and defied expectations, using her journey to fuel her passion for helping others.
Diagnosed In-utero
Kyliah
Story Written by Mother
Kyliah was diagnosed with hydrocephalus before birth and given little hope, yet today she’s hitting milestones, learning new skills, and thriving.
Diagnosed at 60
Al
Story Written by Self
Al was diagnosed with NPH, after worsening walking and memory. A spinal tap confirmed treatment could help, and shunt surgery gave him his life back.
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.