Jessica

My name is Jessica, and I was diagnosed with congenital hydrocephalus in utero. During a routine ultrasound, they found enlarged ventricles, which led to my diagnosis. This diagnosis was difficult for my family and me, as no one else in my family has hydrocephalus, and we had no idea what to expect. From the beginning, my journey with this condition has been filled with challenges, including over 150 shunt-related surgeries, as well as eye, foot, hernia, and gallbladder surgeries. 

Living with hydrocephalus has impacted every part of my life, especially during my school years. I struggled a lot, with poor balance, motor skills, and the stress of constant surgeries and complications. Despite these obstacles, I was determined not to let my medical issues stop me. I managed to pass all of my classes and graduate from high school. I was especially proud to graduate with high scores in the Exceptional Student Education (ESE) department, which supports students with disabilities like me. I also found joy and community in the ESE chorus division. 

My perspective on life with hydrocephalus has changed drastically over the years. At first, I felt lonely and sad, wondering why I had to face so many challenges. But things began to change when I joined the Best Buddies club in high school. That experience helped boost my confidence and gave me a sense of belonging. Over time, I found my purpose, and today, I’m proud to be a Community Network Leader and an advocate for the Hydrocephalus Association (HA). 

HA has been a second family to me since I found the organization a few years ago. My role as a volunteer has given me hope and inspiration during some of my darkest times. The people I’ve met through the association have been truly wonderful, and I’m excited to continue working with them to raise awareness and support for those living with hydrocephalus. Being part of this community has given me a sense of purpose, and I no longer feel alone. Instead, I feel hopeful for a brighter future.

I’ve learned a lot from living with a chronic condition. One of the most important lessons I’ve learned is to focus on what I can do, rather than what I can’t. My advice to others who are dealing with similar issues is to not get too caught up in your limitations. Instead, focus on what you are capable of, because that’s what truly matters at the end of the day. 

Looking back, I’m grateful for all the experiences, even the hard ones, because they’ve shaped me into the person I am today. HA has played a huge role in my journey, and I’m excited to keep advocating and supporting others like me. 

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Tell us about your journey with hydrocephalus!

Share your story of hope and perseverance with us! We will feature the amazing individuals in our community who are living life to the fullest regardless of their condition! Stories are reviewed by our staff and posted on our website and through social media. Stories should be no more than 800 words long. Click here to submit your story today!

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For questions, email: info@hydroassoc.org with the subject line “Share Your Story”.

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