Hydrocephalus patients live in ‘constant fear of medical device failure.’

CBS 42 Living Local

This Living Local segment is sponsored by Central Alabama Hydrocephalus Association

BIRMINGHAM, Ala. (CBS 42 Living Local) – September is Hydrocephalus Awareness Month, and the Central Alabama Hydrocephalus Association is working to raise awareness about the frightening reality of living with the condition. 

Hydrocephalus is a condition where excessive fluid fills cavities in the brain. Those living with hydrocephalus are entirely dependent on a shunt – a medical device with a high failure rate. 

Dr. Brandon Rocque, a pediatric neurosurgeon for Children’s of Alabama, says there is no cure for hydrocephalus. “There is not a medicine you can take or something that you can do to know that it’s gone and gone for good. It’s something that you always have. For (people) who have a shunt, they are dependent on that shunt for life. That shunt has to keep working, or it puts their life and their brain in danger,” Rocque said. 

Placing a shunt, or fixing one that has become broken or clogged, requires brain surgery. That is why members of the Central Alabama Hydrocephalus Association are passionate about raising awareness to find better treatments and a cure for the condition.

Amanda Mullins, a leader within the Hydrocephalus Association, was diagnosed with the condition at age twelve. 

“I started having headaches at night. That led to a hydrocephalus diagnosis after many doctor visits. Since then, I’ve had 16-brain-surgeries,” Mullins said. “The truth of it is that there are kids half my age who have had double or triple the number of surgeries that I’ve had. They have had 60, 70, 80 surgeries on the record, and they are in their teens.” 

A shunt can work for years, and then stop working, “and you’re in trouble very quickly,” Rocque said.

“That unpredictability can definitely be hard. And that’s one of the things that we have studied at Children’s of Alabama. What are the psychological effects of living with a device that you are dependent on and not know what’s going to happen? That can take a big toll on families.”

Over 1-million people are living with hydrocephalus, and many of them do not even know it. 

You can play a vital part in finding a cure for hydrocephalus in partnership with the Hydrocephalus Association and Children’s of Alabama.  All money raised will go towards funding research that will aid in finding a cure. 

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