Adult & Caregiver

A hydrocephalus diagnosis is overwhelming whether you’re a recently diagnosed adult or someone who’s been living with the condition for many years. If you’re a friend or family member, you’ve likely felt overwhelmed while caring for or supporting someone with hydrocephalus. A particular characteristic of hydrocephalus is that symptoms and challenges are often invisible to others, which can lead to a feeling of isolation for those living with the condition.

Helpful Resources

The Hydrocephalus Association provides essential tools and resources that enable you to have more control of your life. We provide the following documentation and can help connect you with resources for questions or issues you may encounter.

  • About Hydrocephalus Booklet
  • Hydrocephalus Diagnosed in Young and Middle-Aged Adults Booklet
  • Durable Power of Attorney Fact Sheet
  • Second Opinions Fact Sheet
  • Healthcare Transition Guide
  • Headaches and Hydrocephalus
  • Eye Problems • Assertive member
  • College and Hydrocephalus
  • Glossary of terms

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Knowledge: Learn more about hydrocephalus, treatment options, and ongoing management.

Physicians Directories: Connect with the right healthcare professional to ensure excellent care for all of your clinical needs. We offer Physician Directories as a resource for both families and clinicians.

Hydrocephalus Resource Library (HRL): Find educational articles about a variety of topics related to hydrocephalus.

Trending Topics: Hear what other adults and caregivers are talking about and access information from medical professionals and Hydrocephalus Association support staff.

Webinars: Be informed and current about hydrocephalus by tuning into interactive, free webinars on a variety of topics.

Community Voices: Experience inspiration, hope and support in these personal stories shared by others in our community.

Community Networks: Connect with adults and caregivers who are navigating experiences similar to yours. Visit these portals:

  • Local Community Networks
  • Hydrocephalus Association Facebook Page
  • Hydrocephalus Association WALK
  • National Conference on Hydrocephalus

Other Hydrocephalus Resources: Reach out to other organizations and hospitals for valuable information and support for individuals living with chronic medical conditions.



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