Teens and Young Adults

If you’re a teen or young adult affected by hydrocephalus, we want you to know that you are not alone. Hydrocephalus can strike anyone at any time. Its primary treatment – the shunt – is far from perfect. Browse our teen and young adult pages to learn about resources to help you overcome the different challenges you may face. This is YOUR place for information and empowerment. Please come back often and share your feedback.

Helpful Resources

The Hydrocephalus Association provides essential tools and resources that enable you to have more control of your life. We provide the following documentation and can help connect you with resources for questions or issues you may encounter.



Learn about hydrocephalus, including treatment options and emergency medical situations.

Teens Take Charge

Teens Take Charge (TTC) trains teenagers and young adults (and their siblings), who are affected by hydrocephalus, to become self-advocates with both health professionals and with their legislators. The program provides support, trainings, and awareness and fundraising opportunities so that teens can be an effective force in making their stories heard. HA has created a place for teens and young adults (ages 12 to 25) to talk via Facebook and Twitter. Many are sharing their inspiring stories on the TTC Blog, go check it out! Join us and help create a community of teens making changes happen!


The Hydrocephalus Association’s Scholarship Program was established in 1994 to provide financial assistance to capable and promising young adults who live with the ongoing challenges and complexities of hydrocephalus. The Teens Take Charge (TTC) Program was established in 2010 and through the program we are able to provide five additional scholarships. With TTC we are proud to offer a total of thirteen scholarships in the amount of $1000 each on an annual basis.

Community Voices

Experience inspiration, hope and support in these personal stories shared by other teens and young adults in our community.

Community Networks


Be informed and current about hydrocephalus by tuning into interactive, free webinars on a variety of topics.

10 Comments for : Teens and Young Adults
    • Tina
    • September 13, 2018

    Good evening. Our son Logan will be 21 on the 24th of September. He was diagnosed with Hydrocephalus in June. Right and Left ventricles are enlarged for his age and has a lot of lesions. The neurologist put him on Acetazolamide . After 3 weeks on it he was so sick. Only wanted to sleep and would not eat. She now has put him on Topamax. 1/2 pill first week and then started a full pill this past Monday. He isn’t eating, school work is declining, moody and seems depressed. I need answers, He goes back to the neurologist on the 24th. Any suggestions?

    • walter asewe
    • August 2, 2018

    afternoon am walter asewe from kenya.currently i have a doughter who has a hydrocephalus and she is 1yr and half since she is not active eve she is not sitting nether talking.so i need your help toward my doughter

    • James
    • July 23, 2018

    Hey i am a 15 year old boy and 3 months ago i had an etv surgery after the operation i felt fine but this past week i have been feeling light headed and have had a lack of concentration and some small headaches should i be worried or is it to do with something else i am very worried and feedback would mean the world to me. Thanks

    • Megan
    • June 27, 2018

    I am 18, and am not sure how to handle myself with having hydrocephalus. I was originally diagnosed at 7 weeks. I have some side effect issues, like communication, occasional migraines, sometimes difficult concentration, etc, especially on one particular topic. I feel like when it comes up, everything spirals out of control. Behaviors become passive. I really don’t know what to do. I feel like I always cause the problem. And I am praying about how to handle myself. I feel like I become a thorn in everyone’s sides. It has to be the hydrocephalus that is causing this because no one else in my family has this, and I am the only one who has Hydrocephalus. Can some please share something that may help me?

    • Audrey
    • May 4, 2018

    I have one of the first shunts put in 1958,I have had no operation since.

    • Wow that is crazy. Makes you wonder why now days they have to always be replaced. That is great
      I have a 27 year old son with hydrocephalus secondary to spinal bifida accompanied by seizure disorder

      • Maria
      • February 9, 2019

      I am very happy to know that and the reassurance. I was diagnosed with this illness on December 16, 2018 after I lost consciousness and had a seizure. I was told more than likely I will have shunts as my ventricles are full of liquid. I’m scared of this operation. I am on anti seizure medication and do far no seizures but I get headaches at times and watery eyes.

    • Brianna Peterson
    • September 8, 2017

    I hate having this condition I always have to go back to the hospital and the headaches I get a very painful

    • Alexis
    • September 2, 2017

    Omg I thought I was the only one with this condition

    • I have that same thought of being alone every time the thought creeps in that something might be wrong with my shunt.

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