I have hydrocephalus

“I use my #hydrocephalus fears to inspire me to live without regrets. So, I’ve done every WALK to End Hydrocephalus held in my hometown and intend to continue to raise money and awareness.”

Today I’m happy that the good days still outnumber the bad days. My hope is that in sharing a snippet of my journey with hydrocephalus, you are able to focus on the good days and not the bad days of your journey with this condition.

I joined the Peace Corps and taught high school Math in Morocco and Kenya. My school in Kenya was at about 10,000 feet. I don’t know if the elevation attributed to the increase in symptoms or not, but within 6 months I experienced a variety of new symptoms.

We are not sure if I was born with hydrocephalus or when it actually developed, but my condition didn’t rear it’s ugly head until one morning when I was 23 years old that I woke up and drove to work.

Rafael is a PhD student in Learning, Design, and Technology. He is currently developing a narrative video game to discuss “hidden disabilities”, focusing on his own experience with hydrocephalus!

In sharing my story, I hope to empower and inspire you to smile through your trials, whether they be with hydrocephalus or any other challenges that you may face.

Knowledge is power and I believe it’s better to be educated than to go into something blindly. Particularly, brain surgery!

My hydrocephalus has played a role in shaping me into the person I am today and has changed my outlook on life. “Always play the best game with the cards you’ve been handed.”

I was born 3 months early at just 28 weeks and I have had more brain surgery’s than birthday’s!

Having a shunt has made my life anything but boring, and adjusting to what I call, “life in low resolution,” was not easy, it has changed my life’s path, but it hasn’t ruined it.

The author of Adolescence Interrupted, a coming-of-age memoir that serves as a motivational road map for anyone forced to confront the overwhelming reality of a daily existence without stability or safety nets.

I was born with an eye condition called Congenital Toxoplasmosis. During the 1970’s doctors did not know much about the Toxoplasmosis condition. However they now know this condition does more damage to the body than just the eyes

An MRI in January 2016 revealed a break in the catheter and I prepared myself for surgery number 5 in one year!

I am so blessed to have such a diagnosis. It makes me appreciate the good days, and makes me realize how valuable and precious health truly is.

From that last surgery at the age of eight, I have been in great health.

I view the challenges I have faced as an avenue for opportunity.

Congenital hydrocephalus
Receptionist/Secretary

Sandy was diagnosed with hydrocephalus when she was 12, but not treated until she was 18. She is in the group of first generation hydrocephalus survivors!

Edgar was diagnosed with communicating hydrocephalus as a child.

Brianna was born with hydrocephalus and Dandy Walker Syndrome. With aspirations to become a doctor, Brianna refuses to let hydrocephalus run her life.

Robert was diagnosed with hydrocephalus at two weeks of age.