Have You Recently Been Diagnosed with Hydrocephalus?

Hydrocephalus Teens Take Charge Advisory Councilby Madeleine Darowiche

Being diagnosed with a chronic health condition like hydrocephalus at any age can be a life changing and frightening experience. As a teen, I think this can be especially true for teenagers because we’re dealing with so many social, physiological, and emotional changes and pressures. I was fortunate enough to have been diagnosed prior to birth, so I did not have to go through the terrifying process of being diagnosed in my adolescent years as some teens and young adults face. Recently I have been thinking about growing up with hydrocephalus, and I have a few words of advice for teenagers and young adults who have been recently diagnosed. I’m no expert but hopefully you will find these suggestions helpful.

Number 1: Educate yourself on the condition and make sure that you fully understand the different treatment options available and everything that you will go through as someone living with hydrocephalus. Having this condition can make one feel different, but I think it would be even harder if you are a newly diagnosed teen. Being a teenager can be a challenge for anyone. Your body is going through changes, you might be transitioning into a new school and taking on more difficult classes and there is also tremendous pressure to “fit in” with your peers. Adding a chronic illness to the mix can make life that much harder.

HA has done wonderful things for me as well as my family through the various resources and programs that they offer. I would encourage teenagers and their parents to use the Hydrocephalus Association as a source of support and information. HA’s resources can help you understand and recognize the symptoms of a shunt malfunction or ETV failure. Knowing the complications and potential side effects of hydrocephalus can help allay the fears that many parents and newly diagnosed teens may have.

Number 2: Remember that you are not alone! The Hydrocephalus Association’s program, Teens Take Charge (TTC), is here to help support and guide you through this difficult transition in your life. It is sometimes difficult for others to understand what you are going through and will continue to go through. In some unfortunate cases, people may become a target for bullies if they are out of school for quite some time and return looking different because of surgery. If this situation occurs, do your best to inform them of your condition. They may just be fearful and not know how to react to your new diagnosis. It is my understanding that some people are not willing to listen about hydrocephalus, but do not take it out on yourself. You are still the same person. That is the purpose of Teens Take Charge, however, to realize that there are people who understand and can help so that you do not feel like an outsider in the world just because you were diagnosed with a little known condition.

Number 3: Think about becoming proactive and involved in the cause. It can include but is not limited to sharing your personal journey on the TTC blog and attending HA events like support group meetings or WALKs. It can even be as simple as participating in HA and TTC’s social media networks. (HA Facebook page, TTC Facebook page, HA Twitter, TTC Twitter, YouTube)

And, FINALLY: My last piece of advice would be to keep your head up and to stay strong… because you are! It may seem difficult now to get through your obstacles of taking charge of your diagnosis and becoming your own advocate, but you can do it, and once you do, it will be a great accomplishment. This diagnosis should not defeat you. No matter how devastating things can be, persevere. You are still the same person, only stronger. Stay determined!

“The brick walls are there for a reason. The brick walls are not there to keep us out. The brick walls are there to give us a chance to show how badly we want something. Because the brick walls are there to stop the people who don’t want it badly enough. They’re there to stop the other people.” Randy Pausch, The Last Lecture.



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