Hello Blog!
Happy September! While for many, September symbolize the end of summer and the start of fall, September holds a special place in my heart for another very special reason. September is Hydrocephalus Awareness Month!
Like I stated in my introductory post, one of the conditions I suffer from is hydrocephalus. My Story with Hydrocephalus began before I was born. Three weeks before I was born my parents went in for an ultrasound where they discovered there was something wrong. The doctors weren’t sure what it was. They were referred to a great neurosurgeon who explained what he thought it most likely was. Hydrocephalus.
What is hydrocephalus? Hydrocephalus is a neurological condition that causes an excess of swelling in the brain that is called cerebral spinal fluid (CSF). Hydrocephalus means that my brain doesn’t control fluid properly and there was an influx of fluid in my brain when I was born causing my head to swell. There is no cure. No one quite knows why people get the condition either. Especially in the situations like mine, where the individual is born with the condition.
In my 21 years of life I’ve faced many obstacles and overcome a lot. I have been through at least six brain surgeries. It hasn’t always been easy and people are not always very kind because of my differences, but I’ve risen up to the challenge and done so much more than people thought I could do. This has caused me to have a great deal of anxiety problems. To this day I still have problems with my vision and balance and I can’t drive a car, but I have achieved so much more than people original thought. I made it through life with grace and dignity (while jamming out to Taylor Swift and watching lots of Jimmy Fallon and The Ellen DeGeneres Show).
I encourage everyone who reads this post to be thankful for what you have in life and to be kind to everyone because you never know what people are going through. I also encourage you to do more research on this horrible disease and do your part so one day there can be a cure. Some people, like myself, are born with the condition. Other people acquire the condition based on certain circumstances including injury while playing sports or they might have it, but they just aren't diagnosed right away. However, depending on the level of severity, some people cannot survive without the proper treatment for the condition. Some people who have hydrocephalus can function "normally" without know side effects or long term symptoms. Some people have a very severe form of hydrocephalus and have strong limitations because of it. They might be handicapped or have other health problems like spina bifida or cerebral palsy.
Other people like me, have some side effects that limit their abilities, but can be highly functioning in the world. One of the common side effects that comes with hydrocephalus is the development of strabismus or more commonly known as lazy eye. I developed this condition and have had a few corrective surgeries to resolve this issue. The miracle of that surgery is that the day after I had it done, I could read a book for the very first time independently.
Some of the main problems with hydrocephalus that I deal with on a daily basis are fine motor skills, balance issues, and lack of depth perception. Academics have also always been a challenge for me. I always felt like I had to work at least twice as hard as my peers to get the same level of success academically.
Social interaction can also be challenging with hydrocephalus. While I'm a very social person, I found it hard to socialize with my peers. Writing was one of the ways I could escape. Unfortunately, I was often bullied because I was different from other kids my age. Those kids just didn't understand what I was going through. I hope one day parents will teach their children to be acceptant towards other children and maybe encourage them to be friends with other people who need a little extra love and support.
If you are reading this and you have been bullied because your hydrocephalus makes you different, please know that you're not alone. Together we can end the stigma towards hydrocephalus and spread the word about this condition.
As I have gotten older, I have learned to accept the cards I have been dealt. There is no changing my situation. I realize that while my struggles are hard and valid, things could be so much worse. I have still have my moments of self doubt, but there also so many good days amongst the bad. I hope to live in a world one day where the knowledge of hydrocephalus is stronger. I am writing this post to share my story. I hope someone that reads it will benefit from it.
If you would like to find out more information about hydrocephalus, please check out www.hydroassoc.org or check out my instagram where I have lots of great information.
See You soon!
Jules
Happy September! While for many, September symbolize the end of summer and the start of fall, September holds a special place in my heart for another very special reason. September is Hydrocephalus Awareness Month!
Like I stated in my introductory post, one of the conditions I suffer from is hydrocephalus. My Story with Hydrocephalus began before I was born. Three weeks before I was born my parents went in for an ultrasound where they discovered there was something wrong. The doctors weren’t sure what it was. They were referred to a great neurosurgeon who explained what he thought it most likely was. Hydrocephalus.
What is hydrocephalus? Hydrocephalus is a neurological condition that causes an excess of swelling in the brain that is called cerebral spinal fluid (CSF). Hydrocephalus means that my brain doesn’t control fluid properly and there was an influx of fluid in my brain when I was born causing my head to swell. There is no cure. No one quite knows why people get the condition either. Especially in the situations like mine, where the individual is born with the condition.
In my 21 years of life I’ve faced many obstacles and overcome a lot. I have been through at least six brain surgeries. It hasn’t always been easy and people are not always very kind because of my differences, but I’ve risen up to the challenge and done so much more than people thought I could do. This has caused me to have a great deal of anxiety problems. To this day I still have problems with my vision and balance and I can’t drive a car, but I have achieved so much more than people original thought. I made it through life with grace and dignity (while jamming out to Taylor Swift and watching lots of Jimmy Fallon and The Ellen DeGeneres Show).
I encourage everyone who reads this post to be thankful for what you have in life and to be kind to everyone because you never know what people are going through. I also encourage you to do more research on this horrible disease and do your part so one day there can be a cure. Some people, like myself, are born with the condition. Other people acquire the condition based on certain circumstances including injury while playing sports or they might have it, but they just aren't diagnosed right away. However, depending on the level of severity, some people cannot survive without the proper treatment for the condition. Some people who have hydrocephalus can function "normally" without know side effects or long term symptoms. Some people have a very severe form of hydrocephalus and have strong limitations because of it. They might be handicapped or have other health problems like spina bifida or cerebral palsy.
Other people like me, have some side effects that limit their abilities, but can be highly functioning in the world. One of the common side effects that comes with hydrocephalus is the development of strabismus or more commonly known as lazy eye. I developed this condition and have had a few corrective surgeries to resolve this issue. The miracle of that surgery is that the day after I had it done, I could read a book for the very first time independently.
Some of the main problems with hydrocephalus that I deal with on a daily basis are fine motor skills, balance issues, and lack of depth perception. Academics have also always been a challenge for me. I always felt like I had to work at least twice as hard as my peers to get the same level of success academically.
Social interaction can also be challenging with hydrocephalus. While I'm a very social person, I found it hard to socialize with my peers. Writing was one of the ways I could escape. Unfortunately, I was often bullied because I was different from other kids my age. Those kids just didn't understand what I was going through. I hope one day parents will teach their children to be acceptant towards other children and maybe encourage them to be friends with other people who need a little extra love and support.
If you are reading this and you have been bullied because your hydrocephalus makes you different, please know that you're not alone. Together we can end the stigma towards hydrocephalus and spread the word about this condition.
As I have gotten older, I have learned to accept the cards I have been dealt. There is no changing my situation. I realize that while my struggles are hard and valid, things could be so much worse. I have still have my moments of self doubt, but there also so many good days amongst the bad. I hope to live in a world one day where the knowledge of hydrocephalus is stronger. I am writing this post to share my story. I hope someone that reads it will benefit from it.
If you would like to find out more information about hydrocephalus, please check out www.hydroassoc.org or check out my instagram where I have lots of great information.
See You soon!
Jules
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