Meet Emily Lucht . . . Fellow Traveler on the Teen Hydrocephalus Journey

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Emily Lucht TTCMeet Emily Lucht, a new guest blogger for TTC. Emily will blog on a regular basis throughout the year, joining Madeleine Darowiche, Henry Guion, and Ariel Yong. Tune in and start a conversation about the blogs either on Facebook or Twitter! Use #TalkTTC.

By Emily Lucht

Hello all! My name is Emily Lucht. I am nineteen years old and am currently a freshman at the University of Arkansas. I am a member of the Alpha Chi Omega sorority. Currently I am majoring in Broadcast Journalism. I am originally from Colleyville, Texas. And, like most (if not all) of you reading this, I have hydrocephalus.

Hydrocephalus is an abnormal accumulation of fluidcerebrospinal fluid (CSF) – within cavities called ventricles inside the brain. When explaining my condition to others I ask them to use their imagination.

Imagine that your brain is a sponge. If you have hydrocephalus, fluid builds up around your “sponge.” Like a bathtub with the water on and a partially clogged drain, this fluid on the brain can’t drain fast enough. For treatment, there’s this magical device called a shunt, which a doctor surgically implants to redirect the fluid drain elsewhere in your body.

Hydrocephalus affects everyone differently and I would like to share how the condition has impacted my life for the past nineteen years.

The Beginning of My Journey

I was diagnosed with hydrocephalus at birth. I was born 13 weeks premature, weighing just two pounds and eight ounces. My mother’s premature delivery caused my hydrocephalus. I was given a temporary external shunt when I was just a few days old, and then a permanent one was inserted when I was older. I had my first shunt malfunction when I was two years old and have had the same shunt the last seventeen years. I have had to endure countless surgeries due to other conditions. I have undergone three eye surgeries for my strabismus (lazy eyes), and had Botox injections to help loosen my leg muscles. The surgeries, hospital stays and other tests have played a major role in my life, but I continue to do my best to live a “normal” life to the best of my ability. Looking at me, no one would know about my condition and its symptoms. I have a few scars to show what I have been through, but other than that, I am just like everyone else.

My Journey’s ‘Extra Baggage’

Almost every single day, I wake up with a headache. The causes can be from almost anything: from stress, lack of sleep, and even if I don’t eat by a certain time of the day this can result in a headache. These are relatively manageable, but I get migraines every once in a while. These can be almost incapacitating and I end up going to the emergency room (ER) for pain relief.

In addition to my hydrocephalus, I have a very mild, but challenging, form of cerebral palsy (CP). This causes me to have very sore leg muscles after a lot of physical activity and typically occurs as I am walking around my college campus. However, my campus is very accommodating and I have a lot of ways to combat the pain whilst on campus.

A Few Highlights on the Journey Thus Far

As I said earlier, I am just like my peers, despite my condition. I have done quite a bit thus far in my life, including dance and theater. I was very involved with productions which included starring as one of the lead roles in three productions of “The Nutcracker.” Also, I have choreographed and directed two different theater productions. I continue to enjoy these activities and look forward to participating in more soon.

So, as I continue to blog for the Hydrocephalus Association, I plan to share with you a different aspect of my experience with hydrocephalus in each entry and how my symptoms change as I continue to adjust to college life. Keep reading, please! There’s more to come…

What’s your journey’s Extra Baggage? Let’s start a conversation. Use hashtag #TalkTTC.

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