Looking Back…Moving Forward: Mentoring the Future Voice of Hydrocephalus

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Jenn Johnson, Hydrocephalus AssociationMany members of our community have come to know Jennifer Bechard, the Hydrocephalus Association’s (HA) Education and Support Manager and our Teens Take Charge (TTC) mentor. She has spent countless hours on the phone offering support, information, caring, and a first-hand perspective on growing up and living with hydrocephalus. She has endured 100 brain surgeries to revise her shunt since her diagnosis at 10 and first shunt placement at 11. Her complicated case of hydrocephalus has not deterred her from being a source of inspiration for the teens and young adults in our community, as she helps them become self-advocates for their condition with medical professionals, educational professionals, government representatives, and the general public. Jenn recently
was promoted to her new role at HA and also married her best friend and soul-mate. Jenn sits down with Amanda Garzon, our Communications and Marketing Manager, to share her reflections on the association and her work with our teen and young adult community.

HA: How did you find HA

JENNIFER: My mom and I will never forget the time that we found the Hydrocephalus Association (HA). It was March 2007; I was lying in a hospital bed and had just undergone yet another shunt revision. My mom could sense that I had hit my limit and was at my breaking point. At the time, I remember feeling discouraged, defeated and quite alone. She began searching the internet and came across the Hydrocephalus Association’s website. She noticed that HA was trying to launch a WALK in every state and that Michigan did not have one yet. My mom jumped on the opportunity, and five months later the First Annual Detroit, MI, HA WALK was held.

HA: Has HA made an impact on your life? If so, how?

JENNIFER: HA has made a profound impact on my life on so many different levels. That initial contact that my mom made truly changed my life. For the first time, in a long time, I was not alone. The most important things that HA gave me were hope, resources, and a support system who truly understood what I was going through.

Last, but certainly not least, HA has given me the opportunity to fight back. Through the WALK, Community Network (support groups) and other programs, I have had something positive to focus on and put my energy toward – ultimately, working towards the goal that others do not have to go through what I did. There is always that chance that I may face more surgeries and complications in the future, but HA has given me the opportunity to turn what could have been a negative situation into a positive one for others. For that, I am forever grateful. 

HA: Why do you feel Community Networks (support groups) are so crucial for the hydrocephalus community?

JENNIFER: Support and the sense of community are essential. Overall, the Community Networks remind individuals that they are not alone, even in their local area. They provide localized support, educational tools, and empowerment to individuals, families and professionals in communities across the country. Every prospective volunteer that I speak with has a different story and connection to hydrocephalus. The one thing that they all have in common is that they want to provide their local community with an opportunity for families and individuals to connect, support and learn from one another. Our Community Networks are vital to expanding awareness and education about hydrocephalus.

HA: As the mentor and staff lead for Teens Take Charge (TTC), what has it meant for you or what impact do you see it has made on the kids?

JENNIFER: TTC holds a special place in my heart. I have enjoyed every interaction and connection that has been made along the way. Overall, my role with the program has been very rewarding. I have been given the extraordinary opportunity to use my personal experiences to help shape the program and give others what I wish I would have had throughout my teen and young adult years. Being a tween or teen can be challenging and stressful in and of itself, but when you add hydrocephalus to the mix, life becomes a lot more complicated. TTC offers peer support and provides our youth with comprehensive resources to help them overcome the different challenges that may arise.

An additional component to the program is teaching young adults to own their condition. This is something that I have always felt very strongly about. Fortunately, my mother slowly began instilling in me at a young age how important it was to speak up for myself and advocate my needs. Know your condition, know what type of shunt and valve(s) you have, know the signs and symptoms of a shunt malfunction or ETV closure, and know your medical history. Remember, no one knows your body better than YOU. YOU are your best advocate. Do not be afraid to speak up for yourself when needed.

It has been an honor to watch and participate in shaping and developing the program. We have so many great ideas and I look forward to what the future holds.

HA: What is your favorite moment with the TTC members:

JENNIFER: It’s really difficult to pick one favorite moment. I have thoroughly enjoyed it all, but something that will always stand out is our 12th National Conference on Hydrocephalus and Advocacy Day. The TTC program funded our advisory council members to attend. They participated in sessions at the conference, advocated on Capitol Hill and presented during a TTC Panel Session at the conference. I was in awe of each and every one of them. I have loved watching them grow and mature into confident advocates, not only for themselves, but for the cause. They are the future voice for hydrocephalus.

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

JENNIFER: Overall, we need to build awareness and educate the general public. Hydrocephalus needs to be more well-known, especially within the medical community. I would like to see us develop new ways to educate the public and medical communities, as well as launch new awareness campaigns to build our profile.

I would also like to see HA focus on further developing our educational resources for each age group, especially young adults and adults. I have learned first-hand that transitioning from child-centered care to adult-centered care can be difficult. Also, that growing older with this condition presents numerous challenges.

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