I have hydrocephalus
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 4 months
Sarah
Story Written by Self
Diagnosed with hydrocephalus at four months old, Sarah has faced surgeries and challenges. Now a mother, she embraces each day with strength and purpose.
Diagnosed at 12
Ayana
Story Written by Self
Despite enduring 15 brain surgeries and life-threatening complications, Ayana shares her story to inspire hope and strength in others on the hydrocephalus journey.
Diagnosed at 4 months
Bill
Story Written by Self
Born in the late 1960s, Bill faced early challenges with hydrocephalus but went on to earn a master’s degree, teach, and become a parent, grateful for his stability while recognizing every journey is unique.
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 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 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 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 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 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
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 8 Months
Wali
Story Written by Author/Self
Wali was in and out of the hospital frequently as a child due to his hydrocephalus, and then again when he was older. But that didn’t stop him from pushing hard in school. Today, he’s doing what he loves to do and is the proud owner of an IT company.