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September is Hydrocephalus Awareness Month

This month marks the emphasize on individuals and organizations joining to support the mission to eliminate the challenges of hydrocephalus by raising awareness through education and advocacy. This is particularly important since progress in new treatment methods or means of prevention have not kept pace due to lack of attention and research funding for this condition. 

What is Hydrocephalus

Hydrocephalus is a build-up of cerebrospinal fluid (CSF) within the brain’s cavities called ventricles, causing the brain to swell. This fluid can lead to a variety of neurological problems. Although commonly associated with the pediatric population (it is the most common reason for pediatric brain surgery), hydrocephalus affects those of all ages. Its causes include brain injury, infection, tumor, as well as unknown reasons or as part of the aging process. The only treatment for hydrocephalus is surgery, either for the implantation of a shunt, or a process called endoscopic third ventriculostomy (ETV).

Why Awareness is Crucial

The difficulty with hydrocephalus is that this disability is often not immediately visually apparent. Many people with this condition look “normal.” Thus, it is sometimes called an “invisible disability.” However, hydrocephalus results in a variety of potential physical and intellectual problems. Children with hydrocephalus can experience learning disabilities and some level of loss of fine or gross motor skills. They can also have poorly developed social skills. Among the elderly, no apparent visual characteristics of hydrocephalus often leads to going undiagnosed, and the assumption instead of the presence of Alzheimer’s disease or other forms of dementia.

Hydrocephalus—What You Need to Know

The term “hydrocephalus” is derived from two Greek words: hydro (water) and kephale (head).

There are two types of hydrocephalus: communicating (or non-obstructive) and non-communicating (or obstructive).

Both types can be present in either congenital hydrocephalus (present at birth) or acquired hydrocephalus (occurs after birth and at any age).

It’s All in the Numbers

The story of hydrocephalus is most effectively told through the number of those it impacts. There is a strong contrast between the need for awareness of this condition and the extent of its commonality. This discrepancy is exemplified by the prevalence of missed diagnoses, especially in the elderly population, and the vast sums of healthcare dollars required for treatment for of this condition.

  • 1 in 500 infants is born with hydrocephalus.
  • Another 6,000 children annually develop hydrocephalus during the first two years of life.
  • There are an estimated .75 to 1.5 million individuals (children and adults) with hydrocephalus.
  • Adults 50 and over are the fastest growing segment of the population to be diagnosed with normal pressure hydrocephalus (NPH).
  • An estimated 700,000 seniors are living with NPH, but less than 20 percent are properly diagnosed.
  • There are over 180 possible causes of hydrocephalus, according to the National Institutes of Health (NIH).

Treatment

There are over 40,000 hydrocephalus operations performed annually (one every 15 minutes).

Approximately $100 million in health care spending in the United States alone goes for CSF shunting procedures to treat hydrocephalus.

In the past 25+ years, death rates associated with hydrocephalus have decreased from 54 percent to five percent, and the occurrence of intellectual disability has decreased from 62 percent to 30 percent. 

Ways to Make an Impact

Hydrocephalus Awareness Month is a good time to consider the various ways to make an impact. Some of these include:

  • Share statistics and the information in this blog with family and friends.
  • Find a support group in your community. A good start is the resources listed here.
  • Explore organizations (such as the Hydrocephalus Association) and causes to which you can connect, as well as make donations.
  • Stay updated through social media: Facebook, Twitter and YouTube.
  • Explore the various research areas, such as the Hydrocephalus Association’s Hydrocephalus Resource Library. Other educational resources are available here.
  • Participate in a walk, road race or other similar event for hydrocephalus awareness and fundraising.
  • Send a note to your congressman/woman advocating for hydrocephalus.

You can learn more about hydrocephalus by reading the many informative and inspiring stories on the Advanced Neurosurgery Associates website. Spread the word!