Lola, 30

I was diagnosed with hydrocephalus at the age of 6. Up until then, I was a healthy child with no known illnesses or conditions. From the age of 6 to 22, I lived symptom free and would have to show my friends the scars on my belly to prove that I had an internal medical device. Around the age of 22, when I had just completed my undergraduate degree, I started to experience really bad headaches, double vision and a loss of balance. After a few months of doctor visits and diagnostic tests, I had my first shunt revision. Over the next 5 years, I went on to have 5 more revisions with the final surgery occurring in January 2017.

After my last surgery, I began focusing on how I could better manage this life-long condition with the assistance of my wonderful doctors, family and friends. While I’d love to say I’ve found a recipe for success, that couldn’t be any further from the truth! Hydrocephalus is a condition that wears many hats and the impact it has on you and I can vary, A LOT! For instance, I have a programmable VP shunt. I also have nystagmus and suffer from migraines and year-round allergies. So, on any given day I could have a sinus headache, shunt headache and mild migraine and it can be hard to distinguish what type of headache I’m having at a given time. This level of complexity requires patience and time. Two things that don’t come naturally as a young professional, but are a must have for a Hydro Warrior in order to have some quality of life.

Today I’m happy that the good days still outnumber the bad days. I hope that will be the case for a long time. I celebrate major milestones and accomplishments, such as traveling internationally without any family members for the first time, which is huge! My hope is that in sharing a snippet of my journey with hydrocephalus, you are able to focus on the good days and not the bad days of your journey with this condition. Celebrate the good moments and remember them when challenges come up so that you can be a Hydro Warrior too! Your doctors, family and friends are all rooting for you along with the great folks at the Hydrocephalus Association.

Tell us about your journey with hydrocephalus!

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