Hydrocephalus is Not A Limitation

Guest Blogger: Caitlin Maynard

Having Hydrocephalus can be an isolating experience. As a person with Hydrocephalus you are, most likely, the only one in your school who has it and must explain what it is often. It can become frustrating and make you feel like an outsider. I can remember my first Hydrocephalus Conference in 2004, the speaker said to those of us with a shunt, “look around, you are the majority.” I cried. I could not get over that feeling of being “normal.”

I am fortunate, I was raised in a family that did not treat me any differently than my younger brother. I have had forty-eight brain surgeries, however my grandparent, parents, brother, aunts, uncles, and cousins never treated me any differently. I went to school, played sports (when I was healthy), and had chores daily. That is the greatest gift my family could have ever given me, to treat me and my brother as equals.  Because of that as an adult I have a strong  work ethic and I never let a headache get in my way, because I don’t see myself any different than the person without hydrocephalus.

Throughout my life I have also been fortunate enough to have friends in school and graduate school who, like my family, care for me when I am ill, but do not see my hydrocephalus as a limitation. I have found friends who encourage me when I need it and do not allow me to get overwhelmed.

It is true that having time away from school and sports you cannot be completely the same as your peers, but my parents did their best. My family has rallied around me in many different ways, including starting a road race that is held on Thanksgiving morning, Thanks For Running. My family is willing to start their Thanksgiving Day early to raise funds to find a cure for hydrocephalus. As a family we make this race a part of our holiday tradition and its fun. I am honored that they are willing to give of their time to do this for me and others with hydrocephalus.


Want to create your OWN fundraiser?

The Hydrocephalus Association’s Make Waves for Hydrocephalus – Do It Yourself (DIY) Fundraising allows you to raise awareness and help fund the search to cure hydrocephalus. Through this program, you can create your own fundraising web page and turn your favorite hobby, sport, event or celebration—you name it—into a unique awareness initiative!

Make Waves for Hydrocephalus is for individuals, families, businesses, schools and community groups—anyone who is interested in personalizing a campaign and raising funds for HA.


3 Comments for : Hydrocephalus is Not A Limitation
    • Leisa Noel
    • December 21, 2017

    I have also been fortunate. I was diagnosed in 1978. My surgeon was the renowned Dr. Norman Guthkelch. That shunt lasted 29 years; through 2 pregnancies, a c-section and a terrible car accident. I have my masters degree plus 60 credits and have written and published a book. I love my job teaching special education. My shunt was revised in 2007. My life has been wonderful. Hydrolysis has not handicapped me. It has made me appreciate how blessed I have been.

  1. Reply

    My wife is a GBM Grade 4 Patient. Post Brain Surgery, she developed Venal Thrombiosis with five weeks of Tumor surgery, twoo weeks later she had hydrocephalus and was operated for a shunt.

    After discharge she had a stretcher fall and developed hydrocephalus again within 4 days after stretcher fall. She was operated upon for EVD after 50 days. she was showing progress but for whatever reason EVD was removed within 24 hours of effective existence.

    Now the little improvement she had post EVD is gone. Few experts have recommended Shunt revision, but are also saying that it is not without risk considering her overall condition. We are looking for non-invasive treatment to relieve her from misery she is having to go through from Hydrocephalus.

    She is 64 years old and is diabetic. Is a borderline BP patient too.

    We are located in Thane (on ouskirts of Mumbai, India). Expert opinion, personal experiences will certainly help us to reach a solution to the series of crisis she has been going through in last 5 months

    • Pat
    • December 15, 2017

    Aree you a mentor to others

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