Every experience is different.
The challenges of living with hydrocephalus vary from person to person. Listening to patients and families helps us understand what support means to them.
Understanding the journey
What is
hydrocephalus?
Hydrocephalus involves a buildup of cerebrospinal fluid in the brain’s ventricles. It can affect people at different stages of life.
Explore answers from the Hydrocephalus AssociationTreatment and ongoing care matter.
Treatment may include a shunt or endoscopic third ventriculostomy (ETV). A person’s clinical team determines the appropriate approach.
Awareness creates connection.
Learning, sharing stories, and supporting research help make hydrocephalus more visible and families feel less isolated.
Educational information only. For medical questions or changes in symptoms, contact your care team.
Questions are a good place to start
Learn at your own pace.
Where can I find a clear introduction?
The Hydrocephalus Association provides a detailed guide to common questions, covering terminology, diagnosis, and treatment.
Where should a newly diagnosed family begin?
Start with the Association’s new diagnosis resources and discuss your questions with your clinical team.
How can friends and relatives help?
Listen to the person’s experience, ask what support would be useful, and learn from trusted educational resources. Every person and family has different needs.
Educational links provided by the Hydrocephalus Association. Carli’s Angels does not provide medical care or individualized treatment guidance.