7 surprising facts about hydrocephalus

Her classmates referred to her as the “Iron Woman” and to no one’s surprise, as a senior in high school, her school named her Student Athlete of the Year for her grit and accomplishments in soccer, floor hockey, softball and swimming. The following year, Olivia Maccoux went onto college, made the dean’s list both semesters, became an active member of her school’s student government and worked as an intern at a children’s hospital. 

Remarkable as these accomplishments are, the fact that Olivia has already had more than 120 brain surgeries makes her story truly exceptional.

Olivia was born with a condition known as hydrocephalus, which causes cerebrospinal fluid (CSF) to  build up within brain cavities. As CSF accumulates, it causes swelling and pressure to intensify within the brain. The most common treatment is to implant a shunt system, in which a flexible tube is placed in the brain to divert the CSF into the stomach for reabsorption.

Though hydrocephalus can afflict people of all ages, races and genders, many people are not aware of the condition. While currently there is no cure, with increased awareness of the condition, better treatments will become available and hopefully, a cure.

In recognition of Hydrocephalus Awareness Month during the month of September, here are seven things you may not know about hydrocephalus:

1. For every 1,000 babies born in the United States, one to two will have hydrocephalus.

There are several causes of hydrocephalus that can lead to someone developing the condition. Today, it is the most common reason for brain surgery in children.

2. More than 1 million Americans are currently living with hydrocephalus.

Hydrocephalus affects the cognitive, behavioral, social and physical development of people in different ways. Despite some difficulties, with proper treatment and care, many are able to live full lives.

3. More than 700,000 American seniors are believed to have Normal Pressure Hydrocephalus (NPH), yet they are not aware because they have been misdiagnosed with Alzheimer’s or another related dementia, or are underdiagnosed.

4. Normal Pressure Hydrocephalus is referred to as “treatable dementia,” because the symptoms mimic those of Alzheimer’s, Parkinson’s or symptoms associated with aging. If left untreated, NPH can result in dementia, but it is one of the very few forms of dementia that can be reversed with proper treatment.   

5. Every 15 minutes, someone has brain surgery to treat hydrocephalus. Annually, doctors perform 40,000 shunt surgeries.

Though it is far from perfect, the shunt system is currently the most effective way of removing the excess cerebrospinal fluid. Unfortunately, 50 percent of stunts placed in children fail within the first two years, requiring repeated brain surgery. 

6. Hydrocephalus is as common as Down syndrome, but receives only 1/30th of the public research funding.

7. Despite how many people it affects, and how many families have a loved one with the condition, hydrocephalus gets relatively little attention from either the media or from public funding. To put this in perspective, though it’s also 30 times more common than cystic fibrosis, hydrocephalus only receives about 1/13 of their amount in public funding for research.

With help from her family, a caring community, dedicated doctors and her strong spirit, Olivia has thrived despite her hydrocephalus. Though she has spent a good portion of her life in and out of hospitals, Olivia has continually showed how she refuses to let hydrocephalus define her life.  

 


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