Honoring the journey of those living with hydrocephalus
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What is Hydrocephalus
Hydrocephalus is a chronic, neurological condition caused by an abnormal accumulation of cerebrospinal fluid (CSF) within the cavities (ventricles) of the brain.
Over 1,000,000 people in the United States currently live with hydrocephalus.
How does it happen?
Hydrocephalus happens when there is an imbalance between the amount of CSF produced and the rate at which it is absorbed. As the CSF builds up, it causes the ventricles to enlarge, putting increased pressure on the brain.
Who can get it?
Hydrocephalus affects a wide range of people, from infants and older children to young, middle-aged and older adults.
Types and Causes of Hydrocephalus
You can be born with Hydrocephalus, hydrocephalus present at birth, is referred to as congenital hydrocephalus.
You can acquire Hydrocephalus, hydrocephalus that develops after birth is referred to as acquired hydrocephalus.
You can Develop Hydrocephalus as an Older Adult. Hydrocephalus that occurs in older adults is referred to as normal pressure hydrocephalus (NPH) and is most commonly seen in adults aged 60 and older.
In 2024, Tiffany's strength was tested once again when she experienced a severe shunt malfunction, causing a dangerous buildup of CSF in her neck. She had to undergo another surgery to replace the old VP shunt with a new system. Watching her endure this with such courage has been both heartbreaking and inspiring. Tiffany is the bravest soul I’ve ever known, and her resilience fuels our fight to raise awareness and support for those affected by Hydrocephalus.
Read MoreOur Story
In 2014, our world changed forever when our first daughter, Tiffany, was born with Spina Bifida and Hydrocephalus—a condition we knew nothing about but quickly became our reality. Within hours of her birth, Tiffany underwent emergency surgery to correct her spine, followed by brain surgery for a VP shunt placement. It was a whirlwind of emotions, fear, and hope as we faced the unknown.