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!

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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.

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

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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.”

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

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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.

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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.

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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

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

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Malformation of ventricles at birth
Integration Technician and Photographer

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

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Ideopathic Adult-onset hydrocephalus
Physical Therapy Assistant

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

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Adult with hydrocephalus

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!

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Teen with hydrocephalus

Congenital hydrocephalus
Senior in High School

Because of my undying passion for aviation, I am planning to attend college to pursue an aviation Science major.

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Young adult living with hydrocephalus

Congenital hydrocephalus with Dandy Walker Syndrome
Senior in High School

With aspirations to become a doctor, Brianna refuses to let hydrocephalus run her life.

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Robert, congenital hydrocephalus

Congenital hydrocephalus
Grocery Clerk

At two weeks of age, I had my first shunt placed. I have been blessed to be alive for 41 years and counting.

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Young adult living with hydrocephalus

Congenital hydrocephalus
Occupational Therapist

In the summer of 2013, my symptoms escalated to having migraines every day, urinary incontinence, vomiting, and severe neck pain.

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Young adult living with hydrocephalus

Acquired hydrocephalus from a brain bleed
College Student

I’ve decided to share my story in the hopes that by talking, we can end the negative stigma around differently-abled people.

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Congenital hydrocephalus

Congenital hydrocephalus
Travel Consultant

We were called into the auditorium and I sat with my class while my mother told them everything; from birth through that day. I cried, but not by myself. The principle, teachers, and students cried with me and I gained friends that are still with me today.

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Congenital hydrocephalus

Congenital hydrocephalus
5th grade teacher

Over the years, I have learned many lessons. I have learned who I was, what can come of reaching for the stars and never taking no for an answer.

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Acquired hydrocephalus

Acquired hydrocephalus from a brain bleed
Security Officer

I am married with 5 kids, working and doing things that doctors thought back then would not be possible.

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