Hydrocephalus Education & Support
When confronted with a chronic medical condition it is not uncommon to feel helpless and overwhelmed. Please know that vital resources are available to you. The Association publishes educational materials and provides one-on-one support through phone and email to help you and your family to understand and manage this aspect of your lives.
Hydrocephalus is a chronic neurological condition characterized by an increased volume of cerebrospinal fluid (CSF) within spaces inside the brain. While there’s no known cure for hydrocephalus, the future holds promise. Recent research gives great hope that we may one day find a cure. In the meantime, gradual advances in technology as well as diagnostic and treatment protocols are helping more and more people with hydrocephalus to lead full and active lives.
Although hydrocephalus (hi-dro-sef-a-lus) is not yet a household word, it is NOT uncommon and you are not alone. Over a million people of all ages currently live with hydrocephalus in the United States, though it occurs all over the world. Hydrocephalus knows no socioeconomic, gender or ethnic boundaries. Of every 1,000 babies born in this country, one or two will have hydrocephalus. It is the most common reason for brain surgery in children, but it can also be diagnosed in any decade of life. Experts estimate that hundreds of thousands of older adults have normal pressure hydrocephalus (NPH), which often goes undetected or is misdiagnosed as untreatable dementia, Alzheimer’s or Parkinson’s.
What You Can Do: The Power of Knowledge and Community
Often the most important thing people living with hydrocephalus can do is become informed. You may feel resistant to learning more about hydrocephalus — afraid of what you may discover and upset that this condition has touched your life — but it is important to recognize that knowledge is power and to persevere through that resistance. What causes hydrocephalus? What are its symptoms? How is it treated? Who can help? Knowledge of the causes and symptoms of hydrocephalus will give you confidence and peace of mind. Knowledge of treatment options and medical terminology will help you make informed decisions and better manage your health care team.
The Hydrocephalus Association empowers people with such knowledge, helping them find the medical care, programs and resources that will work best for them, now and in the future. Please take advantage of all the resources we offer, from personal support, to educational materials, to tools and knowledge to access to high-quality medical care.
The Hydrocephalus Association also empowers people by creating a community of individuals, families and medical professionals — all focused on providing support and medical care for people with hydrocephalus. Community is essential to physical and emotional well-being: you are not alone. We encourage you to explore our resources and become informed and connected. Two good places to start:
- For basic knowledge about hydrocephalus — see Learning About Hydrocephalus.
- For connection with the hydrocephalus community — visit our Facebook page.
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