Genesis Espaillat is a PantherLife senior. Below is her first-person account of life with hydrocephalus, which she wrote in honor of September being Hydrocephalus Awareness month.
By Genesis Espaillat
What are some things you can’t live without? Coffee? Caffeine? Your smart phone? For me, I cannot live without my shunt.
My mom has always told me that ever since I was a baby I had trouble with many things. At the age of 5, she had sent me to the Dominican Republic where my grandparents live so they could take me to see a specialist because here in the United States, even though I was born here, I could not see a specialist due to the fact that I wasn’t able to get a referral from my primary doctor. While I was there, my grandparents took me to go see a neurologist because they saw my head a little larger than a usual person. I also had a lot of coordination problems, my hands and legs would always shake. Based on that, the doctor sent me to go get an MRI done. The results of the MRI showed that I had hydrocephalus and a brain cyst. The doctors said I most likely was born with it – it was congenital.
The results were brought back to the United States, and my mother showed the images to my pediatrician who referred me to a neurosurgeon at Yale–New Haven Hospital. I was admitted that same day and had surgery the next morning. The date of my first surgery was March 27, 2001, for hydrocephalus and while being in the hospital, I turned 6 on March 29. My next surgery was March 31st to remove my brain cyst.
After the brain surgery I had to start all over again. It was like I was reset. I had to learn how to walk, I had to be potty trained again. Complete rehabilitation. It took over about a year and a few months between wheelchair, walker, physical therapy and occupational therapy. Also dealing with hydrocephalus has affected my long- and short-term memory, but as the years have gone by it has gotten a bit better. As a little kid I had to learn how to limit myself from doing things a regular child my age would do such as running, jumping, climbing and doing other physical activities. Today my VP shunt needs to be constantly evaluated by medical professionals. My eyesight has been affected because of the pressure of the fluid that was built up in my brain, and I now wear glasses. My balance and coordination are still affected. I also have a learning disability. However, I have learned how to cope with this condition throughout my years of living with it. It hasn’t been easy, but I have tried to get other people educated and have tried to find ways to spread awareness because not many people know about hydrocephalus. If there is one thing I wish people knew about hydrocephalus, it is that hydrocephalus is a medical condition not a disease. There is currently no cure. More research and awareness are important for those living with hydrocephalus.
I have been very passionate since high school about spreading awareness on hydrocephalus. September is Hydrocephalus Awareness month. My first day of high school I experienced a horrible headache, and I knew it wasn’t a normal headache. I ended up having to go to the hospital and have surgery the very next day because I had a shunt failure. Without this shunt, I will die. This is something I cannot live without. I am very thankful for my shunt because it keeps me going.
[…] Living with hydrocephalus […]
Very proud of you fighter lady! Continue to be strong you are a winner.
I knew this girl. I am in a wheelchair bound, and @ FIU I use to spread awareness about, spinal cord injuries, MS or Multiple Sclerosis and also wheelchair sports. This girl always used to smile at me all the time, and I saw her full of energy. I am a Alumni class 2012, and I am very proud of this girl, Which have a great character, a beautiful personality, and most of it, she is very humble. My love to her. God bless this wonderful girl.
Me siento muy orgulloso de ti mi amor siempre has sido muy motivadora y sobresaliente sigue adelante motivando la vida de las personas que te Dios te cuide y que donde quiera que tu vayas seas luz para todas las personas te amo y te extrano con todo mi corazon mi amor.
Genesis is an amazing young lady and we are very proud to have her as a student in Panther LIFE.
I was born with hydrocephalus and had surgery at 8 months of age.
What I find unusual about me is I never needed a revision as you call them. I am 58 and the only headaches I have are from allergies. I had epilepsy as a child but the seizures stopped before I started High School, and I was on Phenobarb while I was having them but I grew out of that. I never played much sport but I love to walk and dance and have a weight machine at home.
Love youuuu
Very powerful Genesis! The bes is yet to come for you! Keep doing what you’re doing!
Thank you for sharing your story. I wish more people had the courage to share their struggles so openly. It shows true strength and character ❤️
Each and everyone of your comments have touched my heart . You all are amazing . Thank you for taking the time to read my story to get educated on Hydrocephalus .
You’re very brave. Keep fighting the good fight. God has big plans for you.
LOVE YOU genesis ! you are so strong and I admire your bravery <3 muchos besos y abrazos ! I'm so glad you're raising awareness for hydrocephalus, keep it up ! KNOW THAT YOU'RE BEAUTIFUL and DON'T Let anyone else tell you otherwise, I mean it, NO ONE ! Stay strong and faithful ! muaxx :*