Looking Back…Moving Forward: Growing Up with HA

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Youth historically bring a wave of energy and creativity in movements and in organizations. Our young adult and teen community is no different. Our Teens Take Charge (TTC) program provides support, training, awareness and fundraising opportunities so that teens can be an effective force in making their stories heard. It 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. As part of our interview series in commemoration of our 30th anniversary, our intern, Jessica Ford, sits down with Haylea Lynn Blank, to talk about growing up with hydrocephalus and her thoughts on the Hydrocephalus Association.

Haylea is 23 years old and has had 21 surgeries over the course of her life. She is currently living without a shunt after an endoscopic third ventriculostomy (ETV) procedure in 2002.

HA: How did you find the Hydrocephalus Association (HA)?

HAYLEA: Back in November 2002, my mom was looking for more information on shunts and second opinions. She heard about the ETV from my previous neurosurgeon and wanted to know more about the procedure and look at the physician’s directory.

HA: How has HA made an impact on your life?

HAYLEA: In 2007 I was selected as one of the recipients of a Hydrocephalus Association scholarship, and I have attended the biannual Conferences in 2008 and 2010. I have attended the Graham, NC WALK each year since 2008. I participated in a majority of the Charlotte, NC Support Group meetings since they began in 2011.

The memories I have from attending the National Conference on Hydrocephalus in 2008 and 2010 have made an impact on my life. I learned a lot during the breakout sessions as well as a few statistics I did not know. The anatomy and physiology of the brain is amazing and it was interesting to see how each individual’s brain has different characteristics related to their hydrocephalus. I was able to share my experience with others and make several friends within my age group.

HA: What are some of the biggest challenges you overcame as a result of living with hydrocephalus?

HAYLEA: In 2007, I was able to complete my senior year of high school with my graduating class. On August 4th 2008, I had to sign my own surgical papers to have my ETV revised, or a VA shunt placed as a last resort if all the burr holes [hole placed in the skull to allow for fluid drainage] were opened. The procedure worked out in my favor, and I only had to have the ETV revision. I have been living without a shunt device since December 27, 2002.

HA: What do you consider to be your greatest accomplishment?

HAYLEA: My greatest accomplishment so far is completing my Associates Degree in Applied Science with a concentration in Health Information Technology at Davidson County Community College. I am working full time and have my Registered Health Information Technician (RHIT) credentials. My long term goals are to continue working full time in Health Information Management. I decided on continuing my education and pursuing my Bachelor’s Degree in the future.

My short term and every day goals are to get up each day with a positive outlook on life.

HA: Of all the work HA does for the hydrocephalus community, which do you find to be the most important or impactful?

I believe the most important work the Hydrocephalus Association can do is fund research. The most impactful opportunity is the WALKS that create awareness and bring everyone together for a cause. In the hydrocephalus community, we share similar experiences, yet we are all different.

HA: What else would you like to see HA do?

HAYLEA: I would like to see HA have more of an appearance in the offices of neurosurgeons and neurologists so patients and their families know that there is an organization that focuses on hydrocephalus. I want HA to continue to raise awareness and host WALKS, support group meetings and biannual conferences.

HA: Where would you like to see HA 5 years from now? 10 years from now?

HAYLEA: I would like to see the Hydrocephalus Association and the word “hydrocephalus” as a household name. I hope more people become aware of hydrocephalus and know what it is.

I hope the Hydrocephalus Association has some sort of foothold in every state whether it is starting a WALK and/or Support Group.

HA: What message do you have for individuals your age living with hydrocephalus?

HAYLEA: It is okay to be scared and talk about your feelings. No matter what happens now-or in the near future-know that you have never been alone in the fight against hydrocephalus. Other teens and young adults have gone through similar experiences. Connect with a local support group if there is one in your area; they can be a great resource. Never give up HOPE, and continue to fight for awareness.

HA: What message do you have for the general public about yourself, HA, or living with hydrocephalus?

HAYLEA: It is hard to believe what we go through, yet we have to so we can live, and live life to the fullest. We are stronger than we appear to be.

HA: What message do you have for the founding members of HA?

HAYLEA: Thank you for creating the Hydrocephalus Association and expanding awareness! HA is a great resource. Thank you for creating the Support Group Network which I love to be a part of and participate in. Thank you does not express how happy I am that my mom found this organization several years ago.

To learn more about the different programs and events discussed above, please see our resources below.

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