Walk To End Hydrocephalus

CBS 42 Living Local
Christmas Day
December 25 2021 12:00 am

This Living Local segment is sponsored by Children’s of Central Alabama.

Imagine living life completely dependent on a medical device for survival. Now imagine that the device has a high failure rate. That’s the reality for millions of people living with hydrocephalus which is a condition where excessive fluid fills cavities in the brain.

Currently, there is no cure for hydrocephalus.

Patients living with hydrocephalus are dependent on a medical device called a shunt. It regulates the level of fluids in the brain. Dr. Brandon Rocque from Children’s of Alabama explains “that shunt has to keep working, or it puts their life and their brain in danger.”  Placing a shunt or fixing a shunt that has become broken or clogged requires brain surgery, this is why members of the Central Alabama Hydrocephalus Association are passionate about raising awareness to find better treatments and a cure for the condition.

We had the privilege to speak with Amanda Mullins, who is not only a Hydrocephalus Walk chair member, but also lives with hydrocephalus.  “When I was twelve years old, I was diagnosed with Hydrocephalus. Since then, I’ve had 16 brain surgeries,” Mullin says.

She went on to say that there are children living with hydrocephalus that are half the age of herself but may have had double or even triple the amount of brain surgeries that she had to undergo. “They have sixty, seventy, (or) eighty surgeries on their record, and they’re teens.”

A shunt may work for years and then stop working putting the patient in danger very quickly.

Dr. Rocque says that this type of unpredictability can be hard, and the mental strain is something that they have studied. “What are the psychological effects of living with that implanted device that you’re dependent on and not knowing what’s going to happen? It can take a big toll on families.”

You can play a vital part in finding a cure for hydrocephalus in partnership with the Hydrocephalus Association and Children’s of Alabama.

Sign up for the Hydrocephalus Walk on October 16th. Click here for more information.

Click here to make a donation.

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