How Hydrocephalus has Impacted My Life: One Teen’s Story

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By Elizabeth Holthouse, Teen Blogger

One of the ways Hydrocephalus has impacted my life was when I made my video documentary for my Senior Project. (You can watch it below.) That was one of the greatest times. It impacted my life because it was my story. It was a story I told and made with my siblings. After that video was posted by my family and on the Hydrocephalus Association social media sites and their YouTube channel, people would comment and tell me how much my video has helped them, that I did a good job, that my video made them cry, and, for people that knew me, that they never knew I had to go through what I did living with hydrocephalus. I decided that I would like to try to keep sharing my story and letting others know they are not alone.

I would like to share the latest comment from my video that someone shared with me, even though it was three months ago.  

Thank You for the story! I too have epilepsy and hydrocephalus. I am 29 and been living with it my whole life. It is nice to find stories like these that help us feel like there are others who know what we are going through.”

I thought that this comment was great because I knew my video helped him.

I may have Hydrocephalus, but that doesn’t stop me from doing the things that I like. Right now I am volunteering at the local high school with the coffee shop and in Spanish class. I’m really enjoying it. Hydrocephalus also does not stop me from having dreams and goals. One day I would like to be interviewed by Special Books by Special Kids, a multi-media movement that “…supports the acceptance and celebration of all members of the neurodiverse community regardless of diagnosis, age, race, religion, income, sexual orientation, gender or gender expression.” I would also like to meet a famous person. My dream would be to meet Zac Efron on the Ellen Show. Two other things that I would like to do is to fly first class on an airplane, and go to a camp that is for people with Hydrocephalus.* I know that these are just some dreams and goals, but they are something I want to accomplish.

Finally, I think one other way Hydrocephalus has impacted my life is that it has taught me that even though I have it, I’m not alone in this world because I have people in my life who care about me and love me. I have some friends that I know will be there for me, too. I will never be alone because of that.

* Brainy Camps, in partnership with Children’s National Health System, is offering Camp Head Strong, a 3 night sleep away camp for kids and teens living with hydrocephalus from August 9 – 12. LEARN MORE

Are you a teen or young adult living with hydrocephalus? Learn more about our Teens Take Charge program! CLICK HERE

4 Comments for : How Hydrocephalus has Impacted My Life: One Teen’s Story
    • Helen Diep
    • March 27, 2017

    Thanks for sharing your story. I know one of the orphan Vietnamese baby who is suffering the Hydrocephalus right now. He is just 8 months old and living in a small town on country side Vietnam. That town is very poor and he has been adopted by the monk. Does anyone know which volunteer group can help him? I really appreciate it. He is fighting with the life right now.
    Thanks a lot

    • Susan Ashworth
    • March 19, 2017

    What an awesome documentary! My hope is for everyone that sees this helps spread the word about children with this condition to better understand them.

    • Halle
    • March 18, 2017

    Thanks for sharing. My daughter has hydrocephalus as well Dx at age 1. Now Alyssa just turned 10 yrs old. She needed her shunt replaced about 5 months ago. About 3 weeks after her surgery she became peralized and Dx it as transverse mylitis. We are adapting to our new norm.thank you again for sharing.

  1. Reply

    Proud of my niece and her drive to achieve!!

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