Looking Back…Moving Forward: It Doesn’t Make Us Different…It Makes Us Stronger

Our Teens Take Charge (TTC) Advisory Council is made up of eight articulate, creative, enthusiastic teenagers who are ready and willing to take a stand against hydrocephalus. As part of our interview series in commemoration of our 30th anniversary, our intern, Jessica Ford, sits down with TTC Advisory Council member Wyatt Barris to talk about TTC, the Hydrocephalus Association (HA), and his message to the world about living with hydrocephalus. Read more

Voices from Our Community: David Walters Shares his Hydrocephalus Story

David Walters Shares His Story and Encourages Other Teens

My name is David Walters. I live in Washington, D.C. I was diagnosed with hydrocephalus at 2 weeks. I had one shunt revision when I was 9 years old, and I am now 16. I have had no revisions since then (knock on wood). Read more

Voices from our Community: Madeleine Speaks Up About Hydrocephalus

By: Madeleine Daraowiche

Hi, my name is Madeleine. I am 17 years old and will be a junior in high school. I have had hydrocephalus since before I was born. I was diagnosed in utero, and had my first shunt placed when I was 15 days old. Since then, I have had six shunt revisions. My last revision was six years ago. Read more

Congratulations to Our 2012 Scholarship Recipients!

We are pleased to announce the 2012 Hydrocephalus Association Scholarship Awards recipients. The scholarships program marks its 18th year and we are very proud to honor these amazing young adults. Despite the challenges and obstacles of having hydrocephalus, these future young leaders of our community are able to further their education, help their community and inspire their peers. Read more

TTC Members Speak Up About Stress

Introduction by Jennifer Bechard, HA Support Group Liaison

School, parents, homework, sports, relationships and friendships are only a few things that can cause extra stress in a teenager’s life. Adolescent years can be a stressful time period for anyone, but when you add a chronic condition like hydrocephalus to the mix it can further complicate everyday life for teenagers and young adults.

Too much stress in one’s life can affect a person physically and emotionally, so it is extremely important to find out what your stressors are, to seek help and discover different coping mechanisms.

Recently, TTC’s Advisory Council Member, Wyatt Barris, asked our Facebook fans the following question:

“Being a teen or young adult with hydrocephalus can be stressful. What are some things that you do to help you cope with it?”

Below, Teens Take Charge (TTC) Member, Haylea Blank and TTC Advisory Council Member, Wyatt Barris, share their personal experiences, tips and advice.

Haylea Blank:

What is something you do to take your mind off of hydrocephalus?

I am currently 22 years old and have undergone 21 surgeries related to hydrocephalus. I have had to endure fourteen surgeries including the ventriculoperitoneal (VP) shunt I had placed, one external ventricular drain (EVD) with an Endoscopic Third Ventriculostomy (ETV), one surgery to remove my VP shunt, three ETV revisions, a 4th ventriculostomy, and a 4th craniotomy with fenestration. The last procedure I had was on August 4, 2008.

I also have Dandy-Walker Syndrome which affects my 4th ventricle and causes issues with the 3rd ventricle. When I have headaches I sometimes listen to music, either some of my favorite country music or soft piano music. I never knew that piano music could be so soothing. I also like to watch my favorite movie Dirty-Dancing with Patrick Swayze and Jennifer Grey. If I have an extremely bad headache that feels like my brain is in a soup can (an analogy I say to my Neurosurgeon) then I like a cool, dark room and LOVE to sleep. It usually helps and the headache goes away after a few hours.

Hydrocephalus is a part of my life and it ALWAYS will be, but I do not let that stop me from achieving my dreams and working at a job I love to the fullest.  I pray I don’t have any other issues in the future more serious than random headaches, but if I do I am very glad to know I am NEVER ALONE in this FIGHT.

“Remember that you were given this life because you’re STRONG enough to live it.” ~Unknown

Wyatt Barris:

Stress about grades, sports, and many other things, is doubled when you live with the ongoing challenges of hydrocephalus. The constant migraines and being absent from school can take a major toll on your grades and school work, which brings added stress. The way I deal with stress is by listening to music or writing in my journal, but these are just a few things in a wide range of stress relieving activities. You can ride bikes, run, or just step back and breath.

Life is stressful but we have the power to make life happy and fun. We cannot let any stress, whether it is related to hydrocephalus or not, hold us down.

Helpful Resources:

•  Stress Management
• Tips and Techniques for Dealing with Stress
• Teen Health (Stress)
• American Academy of Child & Adolescent Psychiatry: Helping Teenagers With Stress
• Palo Alto Medical Foundation: What Stresses Teens Out?
• Fact Sheet: College and Hydrocephalus
• Fact Sheet: Headaches and Hydrocephalus
• Transition Guide

Muskogee Man’s Hydrocephalus Story Appears in Local Paper

Danny Hardin doesn’t Let Hydrocephalus get in his way.  An avid sports fan and devoted single father, his story was featured in the February 12th, 2012 edition of the Muskogee Phoenix.

Read his story here.

2012 Hydrocephalus Association Scholarships

By Karima Roumila, MPH, Community Programs Director

We are very pleased to offer nine scholarships to young adults with hydrocephalus. On the 18th year of the program we are honored to announce the amount of each scholarship has been increased to $1,000.

These scholarships are funded by the Hydrocephalus Association and by two Gerard Swartz Fudge Memorial Scholarship Funds, two Morris L. and Rebecca Ziskind Memorial Scholarship Funds, two Anthony Abbene Scholarship Funds, the Justin Scot Alston Memorial Scholarship Fund, the Mario J. Tocco Hydrocephalus Foundation Scholarship Fund, and the Giavana Marie Melomo Memorial Scholarship Fund. Read more

Ashley Takes Charge of Her Hydrocephalus!

Introduction by Jennifer Bechard, Support Group Liaison

Recently, Teens Take Charge Advisory Council member, Nicole Padron, asked the following question on Facebook: “What is some helpful advice that you would give someone who has been recently diagnosed with hydrocephalus?” Teens across the country began sharing their experiences with hydrocephalus as well as advice for individuals who are newly diagnosed.

Ashley Snyder is a vibrant, positive 18 year old, who was diagnosed with hydrocephalus at 3 years of age. Ashley has undergone three surgeries to revise her shunt. Although Ashley has encountered obstacles from the condition she continues to keep a positive outlook on life. Below, Ashley speaks up about hydrocephalus and gives some friendly advice to her peers:

Hydrocephalus can be a downer.  I was diagnosed with the condition at age three, so I sympathize with all of y’all who are saying, “of course it’s a downer…how can it not be?” and think that I’m stating the obvious.  But, I think it’s all about perspective.  Despite this condition, I find myself happy pretty much all of the time.  I confess to occasionally dancing around the kitchen and singing in the shower.  It’s a classic example of mind over matter.  It is okay to have headaches, to hurt, to feel tired, or maybe even to feel scared sometimes.  But you can’t let all of that consume you.  If you do, you’re robbing yourself of a ton of happiness which you truly deserve.  Read more

A word from our Summer Intern Tessa!

The non-profit sector is something I find very over looked by the general public. Going into my summer internship, I was unaware of how much work it takes for a non-profit organization to be successful. As an intern I performed a variety of different tasks, and learned the most from being in the hands-on environment. I learned about finances, and how an organization functions day to day. I also learned how beneficial publicity can be, such as the Facebook page, which draws many viewers and serves as communication between members and HA. Read more

Hydrocephalus Teens Take Charge – Chiara Speaks Up!

By Chiara Rocciola

My name is Chiara and I am thirteen years old. My experience with hydrocephalus is with my sister. My sister was diagnosed with hydrocephalus before she was even born. Two years later I was born into a loving family and I had the most amazing sister ever! I remember when I was little that sometimes I had to go to my grandparent’s house because Lexi was in the hospital. When they were gone I had so many questions like: is Lexi  OK? When do I get to see my mom and dad? And just waiting until the moment when I get to see them all again. Read more

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